In France, we call people with XP "children of the moon" because before protective equipment existed they would mainly go out at night. I find it poetic, like the moon is protecting them
Thank you for sharing this! I'm curious, how does it translate to French? What does the phrase sound like in French? (I know I could google it, but I prefer to ask a person who actually speaks the language).
@@amandarhoads4640 French speaker (from canada) I'm not sure if this is correct since we use a lot of different expressions, but the literal translation would be "Enfants de la lune"
My wife developed an allergy to uv rays during her pregnancy. None of the doctors could figure out what was going on. A family friend finally helped when she said she had developed the same thing during her pregnancy and explained what it was. Took about 3 years after delivering for my wife's body to go back to normal. The human body is crazy. Lizzie your not alone and my wife says keep smiling that beautiful smile.
Probably from the changes in hormones. When I was on birth control pills I would burn in less than 10 minutes. I used to joke that I would burn in the shade. No more birth control, no more burning.
I developed it after having my son. I develop rashes that look like hives and my skin instantly burn. It feels like it's on fire. Lizzy know your not alone. My dr still dont know how. Or what to do.
I have something similar. After 2 month of being born I had a allergic reaction to the uv wave and my mother was really worried about sent me tot he hospital were my mother was told I could never be outside for more than 45 minutes or I would have a terrible reaction. Nowadays it’s a little better and I can be outside longer and I’m very thankful that my reaction is not as bad as other
She's not unhealthily thin because she makes a huge amount of time and effort to stay adequately nourished, on a diet that would have made most of us utterly bored and fed up long ago.
Yeah. I like oats/oatmeal but just thinking about having nothing but that & milk formula? Can't even jazz it up with fruit or cinnamon or nuts? I think I'd go insane from the boredom. No pepperoni pizza ever again? No grilled cheese sandwich made with sharp cheddar cheese & tomato soup on the side, no salad from the salad bar at the buffet restaurant across town, no ham sandwiches with swiss or pepper jack cheese, no bacon, no tacos/burritos, no chocolate, no peach or strawberry yogurt, no banana pudding, no pecan pie, no cheeseburgers with onion rings or fries, no steak with mushrooms & onions, no grilled chicken, no baked sweet potatoes with butter & cinnamon, no salt & vinegar potato chips, no fish or shrimp, no carrots or corn or peas, no chili, no spaghetti/lasagna, no mashed potatoes, no macaroni & cheese, no turkey & dressing with gravy at Thanksgiving...😮...I honestly don't think I could mentally handle it.
Having had to do this to a tiny extent (went from can eat anything to having to avoid 26-28 food items) so I would be upset but I would be able to handle that.
As someone with MCAS (mast cell activation syndrome) I really feel for those here that do too, it can be so devastating, I have over 200 known allergies and sometimes will react to literally nothing at all or things I don’t react to normally so doing anything can be unsafe. Ive gone through anaphylaxis hundreds of times and every time it’s just as scary as the first time it happened, shout out to all the masties out there fighting this condition. ♥️
I’m in the process of getting tested for MCAS. I get hives, diarrhea, brain fog/fatigue etc every single day. Exhaustion doesn’t begin to cover it! And the confusion of what is happening to your body when it first starts to happen is so horrible.
I am with you friend. MCAS is awful! Before I received a diagnosis I kept being intubated but I am so fortunate now, to have a great treatment plan. I wish you the best dear.
I also suffer with it - 22 years. I made great improvement with an environmental physician - going from a universal reactor (allergic to EVERYTHING) to living a pretty normal life. It can be done - don't give up hope! I wish you healing. 🙏
I have chronic migraines which have become scarily common. I had always gotten bad headaches as a kid but the migraines started suddenly for about 3 years from ages 18-21 I was I survival mode and in constant pain. I could barely live on my own and go to class and complete school work. I went on a very strict migration elimination diet, cutting out all major food allergens, tons of preservatives, and processed foods. Slowly I got hours back where I was pain free. After a year I was able to enjoy life a lot more. Eventually I also got put on a medication as well. It still isn’t easy and I still have migraines but I have a lot less and I’m able to actually live my life and not just try to survive. These incredible people sharing their stories give me so much strength.
I am so sorry you are going trough this. Do you maintain any diet that helped you? I have chronic migraines myself and it came to 6-7 episodes a month for me. Not long ago my new neurologist found out I'm sensitive to gluten and it can trigger migraines, so I'm gluten free now for a month. It got a bit better, but I'm not migraine free.
I found out my migraines were caused by a histamine intolerance. Took me probably 20 years to figure out. I have reactions to different things, and it will be to things I ate or drank the day before, or earlier in tue day. Sodium caseinate is a huge trigger, then things like MSG, hight histamine foods like shrimp… etc. I hope you are able for figure out all your triggers. The other frustrating thing is when stuff that is safe changes its formulation, then end up not being able to eat or drink it anymore 😢
It does seem more common now, or maybe people are finally talking about it. I've had migraines that would put me in the ER ever since I was 7yo. Im on so many medications, it's ridiculous. Because i have migraines on both sides of my family, neurologists have told me I'm basically screwed for life. I can't hold doesn a FT job because of it. I feel so bad for people who have no other choice. I don't understand how they cope.
I have had migraines since the age of 12 even been hospitalized for one that would not go away! Have you tried cutting msg out of your diet! It is a big trigger for a lot of migraines sufferers!
I have EDS and POTS, but luckily have been able to avoid an MCAS for now. I'm only 21, but I'm hoping to avoid this one. I've already got enough on my plate with everything else I've been diagnosed with.
@@mysticzebra5421As someone who has all 3 can confirm it is indeed a nightmare when you have the trifecta of uncommon syndromes that no one can fix and trying to get in with the specialists are insane my last one I was on a waiting list for over a year just for a consultation was well worth it as cromolyn has kept me out of the hospital and I don’t break out into hives and start swelling up when I go outside or open a window anymore so that’s a plus but trying to deal with just one alone is horrible never mind 2 or 3 it’s like every time I turn around i spontaneously dislocate,I have an allergic reaction,or I’m suddenly passing out or it’s something else to do with one of my other diagnosis’s . Hopefully you never have to deal with mcas on top of everything else you have going on!
Wow watching this makes me so much more thankful about my situation. Two years ago my lips suddenly became allergic to almost every lip product id usually use. It's now extended to some foods. Watching these people persevere is inspiring and humbling.
I have MCAS. It took 35 years and about 100 MD to get a diagnosis other than "Crazy Woman Disease"! I can get the mast cell stabilizer, Ketotifen, in 3rd World Countries, but NOT in the US, so I left. Luckily I studied Molecular Biology at uni and can treat myself. You have no idea the damage US male docs did over a lifetime of telling me there's nothing wrong with you. You're just crazy!
I kind of went through the same thing. 28 years of male doctors telling me that it was just anxiety, all in my head, I needed anti-depressants and therapy, etc., and eventually I just got sick of it and figured out what was wrong with me on my own: Hashimoto's Thyroiditis. They were going to try me on anti-psychotics before I got frustrated and figured it out myself. I've only had 1 single doctor in my entire life who's listened to me. I'm 34.
My brother has aquagenic urticaria, getting hives and welts all over his body and anaphylaxis. He started a monthly allergy shots when he was formally diagnosed at 13. This shot helps prevent the large reactions and allows him to lead a normal life.
I also have aquagenic urticaria! Definitely a tough one to live with as it makes showers, swimming, sweating, crying, spit, and all other bodily fluids super hard to deal with. Hell I remember crying because my eyes itched so bad but crying made it worse. Im glad he is able to get shots to help with the reaction to it. Mine has calmed down since pregnancy also my allergy to dairy is nonexistent now too. Much love from Texas. 😊
@@emmie0426 thanks for the message, it is nice hearing from someone with the same experience. I remember how uncomfortable he was and the whole body hives. Glad yours has eased a little, post pregnancy. My favourite memory was visiting Disney (about 2 months after he started his shots) and him insisting on going to the water park, we have a pic of him running out of the waves and never seen such joy. It also poured one day and we have pics of him just dancing in the rain as people hid out.
I knew someone in highschool who had aquagenic urticaria. I always wondered if it could be a specific chemical or mineral in the water rather than just the water itself?? I have cold urticaria and it's pretty miserable!
Isn’t odd, that those dealt the hard cards, seem to be happier than those living normally. Maybe because they go through so much pain and difficulties, that when they can do normal things, they appreciate them so much more and never take anything for granted. The rest of us, don’t even think about how lucky we are, to be healthy. Life can be incredibly unfair to some, my son included, who was diagnosed with cancer at age 5. This experience led me to meet some of the most incredible people on the planet, so brave, so inspirational and yet living with huge challenges that most people don’t even consider.
I go though bouts of a painful chronic condition and I'm happiest when I can go back to leading a normal life. It definitely makes you appreciate just existing without excruciating pain.
Yikes. When I was 14 I spend an entire summer covered in hives. I was tested for every common allergen they were able to test for (the one where they cover your entire back) and apparently I’m not allergic to anything! We tried cutting out foods, different laundry detergents, and anything else we could think of. I tried at least six prescription antihistamines, and multiple combinations of prescriptions, but nothing worked. The only thing that gave me any relief was ice water baths. Otherwise I would be covered in thick, hot welts from head to toe. I even had them in my armpits. Then they went away. It was so traumatic- the next spring I got hives again for a couple weeks, and I thought I was going to lose my mind. I probably cried for like 3 days straight imagining having to go through that again. I’m still a huge baby about anything itchy. I recently went on a trip where I got some mosquito bites, and carried around one of those anti-itch sticks, so I was able to avoid scratching them until they bled, maybe for the first time since my hives episode 25 years ago. And this is what Beth lives with. I hope she’s still doing well, and that maybe she grows out of some of her allergies with time. This type of allergy situation is so incredibly difficult. My allergy doctor thinks I might have been allergic to a seasonal virus that either mutated so I didn’t react to it anymore, or I grew out of the allergy.
Wow! What an inspirational group of people. I have a sun allergy, I have to wear spf 50 in the winter and spf 100 in the summer. Instead of boosting my vitamin D, it depletes it and I am left exhausted and in excruciating pain. I rarely go out now, which is fine, I'm almost 58. The Drs think that it's something to do with my Lupus. These young people are missing out on the most important times of their lives. It's incredibly sad.
I can relate to a mild degree. I was diagnosed with acute spontaneous urticaria. This means i randomly have severe, but to date, not life threatening, allergic reactions to nothing. I haven't had an episode in a while, so that is great!
I've seen a functional Dr and he tested me as I was having lots of random allergic reactions and I have an extremely high level of mould and am taking lots of supplements to help but basically eating sugar encourages the mold etc ..I'm not great at explaining so we are trying to detoxix the mold and then not eating sugar is what helps the most ..and also have lots of issues with mast cell..he also wants me to work on bagus nerve exercises which helps to control mold sensitivity
I am surprised that Lizzie hasn’t decorated her hat setup with something saying “I’m allergic to the sun” or have a circle with a sun symbol and a line through it.
@@whispers._.she shouldn’t have to, but it can feel awkward when you know people are wondering. Like when you are coughing for some reason and you explain to people around you that you aren’t sick, or don’t have COVID. You don’t have to, but it can make you feel better.
For Willow’s mom… I’ve heard of “dry suits” for scuba diving. I have never used one so I don’t know how they work. But it might be a way for her to swim or even dive (when she’s older) with her daughter.
I'm allergic to sickness, that's how I call my persistent urticaria. Every time I get sick, a rash (like Caroline's) pops out covering my neck, chest and upper part of my back. The sicker I am, the bigger the rash is... It's super uncomfortable as I have to deal with sickness and rash at the same time. Doctors haven't told me a proper solution except for two pills of anthistamine. I've learn how to cope with it by myself a little bit, but I'd like to have a better solution. I completely understand these women 😣
here's the problem with that logic.... anxiety is actually normal. You are born with it. Its a natural defense mechanism and I dont see a correlation between anxiety and allergies. Its more than likely the chemical compound in the medication, not anxiety itself. Its like thalidomide. It started out as a drug to be proven quite dangerous but the chemical compound itself was shown helpful to become other drugs we use today. Allergies can come from a variety of things and you can also be born with those as well. Other conditions, physical conditions do cause allergies too. Genetics play a part in allergies to some capacity but not always. So there wouldn't be much room to study and possible correlation between allergies and anxiety since both by themselves are quite well studied. Especially when you have an allergist as a specialization... they would know by now if there was any correlation and so far there isn't. When anxiety is natural and normal and most people can control it and yet can have allergies, even life threatening allergies at the same time. Its not really something worth studying because I cant see any reason for such a relationship that logically wouldn't exist. Otherwise you would see some serious problems in people over several generations by now. With modern medicine, they could have found this out 100 years ago easy.
@@Skatejock21 Well, what if the allergy caused anxiety in the person and there is a vicious cycle going on? That’s what I’m trying to say. High cortisol levels and histamine causes anxiety which is also caused by allergies. That’s what I’m getting at.
@breadroomghost8764 these things are so difficult to diagnose, it's usually multiple doctors and specialists. I was diagnosed with Ehlers-Danlos by a Cardiologist with specialization in autonomic dysfunction and a neurologist working together.
I have MCAS as well and it helps so much to see other sufferers thriving. My family basically kicked me out instead of dealing with my allergies. It’s wonderful to see other people getting so much support ❤
I have Cholinergic Urticaria, allergies to heat. I do understand what they're going through. If I get hot for a second I start to itch. If I'm out in the sun for too long I get hives. Not fun. I can't even exercise. When I cook I need to turn on fans even in winter.
I have cold urticaria cold air and water cause hives and itching. I guess most people grow out of it, but mine has only worsened with age. My last bad episode was right before I was diagnosed with thyroid cancer. I broke out and it was 70 degrees.
34:20 I have mass nerves rewiring throughout my whole body and only got diagnosed with Marcus Gunn syndrome. If I walk for longer than 20m my legs are on fire. This is so real and thank you 🖤
Natasha is beautiful inside and out. Even without hair she is gorgeous and I understand being stubborn. I have a lot of allergies although nowhere to her level. I was working as a paramedic when I had my first anaphylaxis and my coworkers saved my life. It was freightening and having to take epinephrine was the worst feeling because it gave me very severe chest pain. I’ve had anaphylaxis to IV iron which was horrible! Had to be admitted overnight many times. I wish everyone the best in this video!
Lizzy has an allergy to sun rays. She gets cancer if exposed. I am truly impressed with her as she finds ways to be safe going out, and she has had many surgeries for this. There are no scars on her face that could see. I'm glad for her. Having that allergy must be horrifying for both her parents and herself.
I also have oral allergy syndrome (now called pollen food allergy syndrome) that has turned into mast cell activation syndrome. MCAS is a NASTY disease! There are cases that are better and cases that are more severe. As of right now, mine is pretty mild, but then again you can't really ever call MCAS "mild". It's absolutely terrifying being able to have an anaphylactic reaction from anything and having no idea what will become your newest trigger. And what the young ladies here didn't mention is that mast cells release other mediators other than just histamine. Heparin, there's a type of cytokine called TFN alpha, so many things that can cause even more symptoms other than allergies! Often my more "mild" MCAS reactions are me getting horrible joint pain, muscle pain, and other symptoms that would make you think you had a really bad cold. Except that it's not. It's just your mast cells going crazy when there's actually nothing wrong at all.
I also have a quite rare allergy that the doctors didnt know about either, its called phytophotodermatitis (i prob spelled that wrong) it means if i touch my allergy (citrus) while out in the sun, i will get burns (it happened when i was like 2 and i got 1st degree burns all over my arms) the burns that it gives me, last for 6 months… and yes ik, these people have it much harder, im just saying that the doctor didnt know about mine at first. If you read all of this, ty!
I have SLE and Discoid Lupus. Instead of the sun causing problems with my Lupus, it actually helps me immensely. It does the reverse from what most people with lupus experience. If I don’t get enough sun, my joints, muscles etc are very painful. With Discoid Lupus instead of the sun making my rashes worse, it helps heal them. If I don’t get more sun than the normal person, I develop rashes due to Discoid. My heart goes out to her. I couldn’t even imagine. I don’t know what I would do without being outside in the sun all times of the yr. I spend more time outside than inside. I wouldn’t be me without the sun.
Oh my God, Lizzie. What a beautiful, beautiful person. How lucky are all of her friends and family, to get to spend time with her! She's absolutely delightful.
Same for me as well! Can’t try and shovel snow unless I’m in 5 layers and even then I still get hives. Even washing my hands in cool water forget it 🤦🏼♀️ and yet I live where the winters are disgusting!
I developed this spontaneously after a year of severe stress, but luckily it went away after a few months of fish oil supplements. It was winter and my hot water service was dodgy, so I lived in fear of taking a shower and having the water suddenly cut to cold.
Was born a preemie and at forty five I still have health conditions that I didn't know about being diagnosed with anxiety p t s d is not easy but sharing your story is something that makes you really savage ..Thank you for sharing
I'm over 50yrs, & I've been allergic to most things in life. From Trees, grass, Pollen, Mold & Mildew. I have to stay away from a lot of foods that most ppl eat normally. My sons inherited food allergies as well. Last year, I found myself having anaphylactic symptoms with the sesame seeds on a bun. I'm allergic to most meds & antibiotics. I'm so glad I have a name for my symptoms!!!!!
Lizzie needs to have an umbrella at all times. I don't have that terrible disorder, but I burn so fast that I always carry an umbrella and I have for years.
@@amyletcher8165 Postural orthostatic tachycardia syndrome. Basically, your heart rate skyrockets when you go from sitting/laying down to standing and can result in dizziness, fainting, brain fog, and other similar symptoms.
I was allergic to water during my pregnancy. It went away a few months after giving birth. I don’t know what I would do if it came about after giving birth and stuck around. It was absolutely terrible. It drains your energy so much. Sweating and crying even set it off. And all I wanted to do was cry about it 😢
I got bipolar and don’t handle that well any of these people are superhero’s I wouldn’t be able to deal with these and they seem happy and fine mostly bet some days are hard but they get thru it prayers for all of them but wow I’d be proud to be there parents
I also have MCAS resultant because I was born with hypermobile Ehlers-Danlos Syndrome. Mine isn't as severe however, I do have the same symptoms: randomly triggered histamine reactions, I'm often incredibly itchy, I get blisters on my scalp, legs & armpits where there is hair & they take weeks to months to heal, headaches, LOW blood pressure, Neuropathy, hives. Stressors, anxiety, undue pressure, conflict, illness, and most plants cause nasty flare-ups. I have had anaphylactic reactions 3 times so I have to be extremely careful.
About a year ago I started noticing I was getting hives randomly. Checked all the usual culprits (soaps, perfumes, etc) and started paying attention to what I was doing each time. We noticed it seemed to happen when I was in front of a fan or after a shower. Those two things seemed unrelated. Then I went swimming but the water was pretty chilly still. I got out after 20 minutes because I felt weird. I broke out in full body hives and nearly passed out on my mom because my blood pressure had apparently plummeted. Turns out I'm allergic to cold. I went to an allergist and found out I'm actually allergic to every tree, grass, weed, flower, cats, dogs, birds, and even cockroaches. Being allergic to cold was actually a hyper reaction at that point. I have to take three allergy meds a day, I have HEPA filters in all my rooms, the windows stay closed, and my allergist advised me to wear a mask when outside and to shower and change my clothes when I get home. I still consider myself to be lucky. I feel like my symptoms are much easier to control then these folks. I can't imagine what they go through daily.
I have aquagenic urticaria. It is an awful condition. If I get wet or even sweat I itch so intensely it drives you mad. I also feel like I’m on fire. Someone told me about taking beta alanine prior to exposure to water and it helped immensely. It is a true game changer. I can now shower without agony.
My grandma has this type of allergy where she’s allergic to salicylates, which are in a whole variety of foods and certain medications. Not sure how common that is.
As someone with a medication allergy, I feel so bad for people who are allergic to things like these. I hated having allergic reactions each time a doctor doubted my allergy.
I can definitely relate to that. I can take penicillin & benadryl by mouth but not in i.v. or shot form & have had medical people tell me that it's not possible to be allergic to one but not the other.😢
Me too, all pain meds derived from opiates, have asthma so can't take ibuprofen. Lots of food allergies the rarest is citrus. Had both hips replaced awake with spine blocker, no pain meds allowed other than paracetamol. My surgeon said if I ever get cancer I'd never be able to have morphine etc.
I have a Rare DIsease as well! It's called Varigate Porphyria or.. VP. It has some other symptoms as well, but ALSO has the sun issues like the XP lady! They are in the same family, but XP is much more severe with the sun problems.
Only this year I developed a reaction to iodinised contrast for PET scans, first 11 days to react, then 6 hours, so now they have to dose me up from the day before. If it happens it is 7 days of horrible red weals, hives and itching head to toe. The ladies living this 24/7 are truly courageous souls, and very brave.
I just developed a reaction to the contrast for the Pet /Ct scans and I have to have them every 3 months ( I had cancer and I was just declared cancer free in May)! I am at high risk for reoccurrence so my dr is following me closely
My allergies aren't that bad but growing up in a small area where no one else had mine level of allergies I can relate somewhat! 😢 Couple of my family members called me the bubble girl back in the 80's.
Im allergic to the cold. It started out with sneezing and over the years it has gotten worse. Sneezing and hives and now, this year, asthma symptoms. I have to use an inhaler after going outside in cold air and it's not even winter yet. I'm really worried.
Have it an autoimmune disorder and being diagnosed later in your life.I didnt know, you're allergic to sugar.A lot of different things really?Makes you feel sad but then you find out what you can't have and what you can do to substitute it as the purpose of life work, makes it worth it for you
I have MCAS. It's torture to live with. I've lost most foods now. I react to products, smells, hormonal changes, temperature, and my "safe" foods, and things can change at any given moment. I hate living with this.
Humility is not describing it even in the depth of emotion. I am being humbled. For sure. The sheer resilience and willingness. May we one day learn from you.
I have MCAS, POTS, Hypermobility, Fibromialgia, ME Chronic Fatigue Syndrome, plus a lot more. I am even allergic to oats. It is a scary thing. This video is amazing at spreading awareness.
I have an allergy to lavender…….if it is growing and in flower, it makes it impossible to breathe as my airways swell up, and constrict the air in and out of my lungs. If it is ‘natural’ but added to a cleaning product or perfume the results can be hospitalising. I try to avoid it at all costs but it can be challenging. I also react to oranges, splashes on my skin causes blisters which eventually burst and heal as white scars, my forearms are covered in them. I dread to think what would happen if I drank orange juice or ate it. Allergies which are out of the normal are often disregarded by others…..I used to teach and my learning support worker was told about this, but spritzed the oil as a spray to help her with anxiety in my classroom and put me in A&E twice. School disciplined me because I sent her a private message asking her to not do this again, or ask if she can swap students to support and avoid my classroom as she practically bathes in the stuff at home. School had asked her not to use it in my room but refused to take on board the fact that it permitted everything she wore and would cause the same reaction every time she was in my room, which would mean more A&E visits and a few days at home after each event to recover…… Having been treated by ambulance staff in the school office twice, the situation did not improve so the union became involved. Eventually the stress was too much and I lost my ability to speak for two years and was given a severance package……take allergies seriously!
Sasha also has Mast Cell Activation Syndrome. Unfortunately most doctors don't know anything about the illness so you can go decades without a diagnosis. It took me 20 years after suffering terribly - being told it was all in my head - it was stress, and was sent to psychologists & psychiatrists. Unfortunately none their medications lessened my reactions & actually made me even worse, so I knew it wasn't mental. I finally found an environmental physician who helped stop the severe histamine release and resulting reactions which allow me to live a much more normal life. My heart goes out to these two ladies because I've been where they are and it's the most life altering and frightening illness you can imagine.
I've been experiencing this issue myself. I haven't yet be fully diagnosed, so thank you for letting me know that I'm not alone. I also want to point out that there weren't any men experiencing this. Coincidence?
Women have stronger immune systems (presumably because we are the ones that can get pregnant) and therefore the majority of immune dysfunction sufferers are women. And because of medical misogyny, immune disorders, like most other diseases that primarily affect women, are under-studied.
The older I get more allergic reactions. I can no longer eat night shade plants or red meat and now chicken. I have other immunity problems that will keep me home rather than going to the grocery store, the local market pharmacy which has a whole section of perfumes and cosmetics that I’ve always had problems with. Even as a teen I couldn’t wear makeup with out my mouth drying out and me eyes becoming extremely itchy. I’ve lost on many adventures but I would rather be safe than sorry. Very good info in this video.👍👏🏠
In 2005 my adrenal glands failed. I survived, but not without permanent issues. One being a new allergy to water! At first, it was to even drinking water. I could only shower once every 2-3 months and had to keep olive oil on my skin at all times. I had extremely dry skin with consistent hives. Not able to sweat and no body odor or oils. 19 years later, I can drink water, but showers are still very painful. Like, cactus and hives for weeks. I have yet to find a doctor that knows what happened and how to fix this.
Watching this has put so much into perspective. I will never whine about ragweed or maple pollen again. Seasonal allergies are nothing compared to the suffering in this this video. At least I get a reprieve during the cold winter season, no matter how miserable I feel the rest of the year. ❤
all of these people continuing to live their life is why disabled people are the strongest mentally. people who aren't disabled look at them like they need pity, but in reality they're like....i can live my life too even if there's restrictions
It's nothing compared to XP or any of the others but when I stay too long in the cold, or when my body gets too cold, it starts to break out in hives. It lasts for a a week or so. I hope Lizzie knows how bright the light she radiates is!❤
Lord Bless everyone with severe allergies I'm siiting here looking at them my body is very itchy broke out badly from my food acid allergies it feels like ants, bees biting under my skin I'm irritated too
i get hives all over my body every morning. i’m not even sure why, but the hives get worse when i touch water at all (that where allergy pills come in). it must be horrible to be allergic to specifically water and have to deal with that with a child in your care as well.
I have a fragrance allergy (I believe it’s actually common to varying degrees + it’s terrible for us all but many are in denial or would never consider it) and it’s sooo hard to get family, friends and co worries to remember, understand, care or sometimes believe it.. and fragrance is EVERYWHERE
I also have MCAS it is a very tricky disease. I live in Sweden and I get allergic to the cold in the winter my face gets full of hives. And if its very cold for a long time I usually get pneumonia since my lungs gets very irritated. We have a lot of mast cells in the lungs. And I also have a lot of issues with food, but I have found ways that make my body stronger so nowadays I can tolerate most things better.
These are so interesting. I get a reaction to water on my forearms if I get a small amount of water on them (like a sprinkle), but for some reason if they are fully submerged or wet all over, I do not have this issue.
I've had tin and dairy allergy from I was a child. At the age of 28 when I was pregnant with my third and last child, I developed eczema. As the years goes by, I developed quite a few more food allergies. I'm also allergic to the sun, but very great full that only mildly. As a chef, I had to resign my job at the age of 41.
As a child to young adult, I was allergic to extremes of hot and cold, sunlight, my own sweat, all grasses, mouldering leaves, almost all foods at one time or another (but not peanut butter). There were no epi pens then. I had to go to the ER for epinephrine shots. And contact. I still have this. Contact with my skin causes large abrasions. And infection. If I had an infection, I would get hives. Everything caused huge, thick, itching hives all over my body. By my forties, I had moved to Southern CA, and my hives began to quiet down. Allergies can wax and wane sometimes.
Its moments like this where i am very thankful that my allergy is more annoying then life altering like this. This is truly humbling and mind opening to how insane the human body is. (For those wondering, I have an extreme metal allergy with iron burning my skin like im touching fire. Other metals give me hives)
My friend has a rare condition where she can be allergic to something one day and then not be allergic to it the next day and she can be allergic too every thing
I might not have any allergies but my friend is actually allergic to milk and flour so it’s actually painful to see your friend not being able to eat cookies like we did when we were young but she still laughs smiles a lot so I feel like I should not give up something I was doing so good luck with those allergies ❤
MCAS isnt that rare. I live with it due to Ehlers-Danlos Syndrome. A high percentage of us do. It SUCKS so much. More recognition is really really needed. We need to stop seeing it as a rare disorder, otherwise doctors wont learn about it
In France, we call people with XP "children of the moon" because before protective equipment existed they would mainly go out at night. I find it poetic, like the moon is protecting them
Thank you for sharing this! I'm curious, how does it translate to French? What does the phrase sound like in French? (I know I could google it, but I prefer to ask a person who actually speaks the language).
@@amandarhoads4640 French speaker (from canada) I'm not sure if this is correct since we use a lot of different expressions, but the literal translation would be "Enfants de la lune"
That's really nice that
It explains why people centuries may have thought people with this allergy were vampires
Lizzies adorable. She may be allergic to the sunshine, but she legit can light up a room.
Agree!
Total agree. She’s a sweetheart!
She’s can make up for no5 being able to see sunshine , because she is sunshine
My wife developed an allergy to uv rays during her pregnancy. None of the doctors could figure out what was going on. A family friend finally helped when she said she had developed the same thing during her pregnancy and explained what it was. Took about 3 years after delivering for my wife's body to go back to normal. The human body is crazy. Lizzie your not alone and my wife says keep smiling that beautiful smile.
Probably from the changes in hormones. When I was on birth control pills I would burn in less than 10 minutes. I used to joke that I would burn in the shade. No more birth control, no more burning.
I developed it after having my son. I develop rashes that look like hives and my skin instantly burn. It feels like it's on fire. Lizzy know your not alone. My dr still dont know how. Or what to do.
I have something similar. After 2 month of being born I had a allergic reaction to the uv wave and my mother was really worried about sent me tot he hospital were my mother was told I could never be outside for more than 45 minutes or I would have a terrible reaction. Nowadays it’s a little better and I can be outside longer and I’m very thankful that my reaction is not as bad as other
My mom developed it recently when she’s starting to get menopause
The last girl and the comment "why aren't you thin" made me so mad. She's so thin but since she's no Eugenia thin then she's lying?
I agree. People are ignorant.
She's not unhealthily thin because she makes a huge amount of time and effort to stay adequately nourished, on a diet that would have made most of us utterly bored and fed up long ago.
I was thinking the same thing. No one has the right to comment on one's body type.
I'm Bulimic and got asked that. Really hurt my feelings :/ some people are just ignorant.
she's not "so thin", but is yes, quite slim.
Sasha and beth are so cute, you can tell how much they love and care for eachother
They are beautiful together❤❤❤❤❤❤
That poor Beth!! I can't even imagine having to deal with a condition like that, but Sasha is a frickin angel!!! 🥲
To go from being able to eat everything or anything to just formula & oats…. I can’t even say what’d I do, props to her
Yeah. I like oats/oatmeal but just thinking about having nothing but that & milk formula? Can't even jazz it up with fruit or cinnamon or nuts? I think I'd go insane from the boredom. No pepperoni pizza ever again? No grilled cheese sandwich made with sharp cheddar cheese & tomato soup on the side, no salad from the salad bar at the buffet restaurant across town, no ham sandwiches with swiss or pepper jack cheese, no bacon, no tacos/burritos, no chocolate, no peach or strawberry yogurt, no banana pudding, no pecan pie, no cheeseburgers with onion rings or fries, no steak with mushrooms & onions, no grilled chicken, no baked sweet potatoes with butter & cinnamon, no salt & vinegar potato chips, no fish or shrimp, no carrots or corn or peas, no chili, no spaghetti/lasagna, no mashed potatoes, no macaroni & cheese, no turkey & dressing with gravy at Thanksgiving...😮...I honestly don't think I could mentally handle it.
Having had to do this to a tiny extent (went from can eat anything to having to avoid 26-28 food items) so I would be upset but I would be able to handle that.
As someone with MCAS (mast cell activation syndrome) I really feel for those here that do too, it can be so devastating, I have over 200 known allergies and sometimes will react to literally nothing at all or things I don’t react to normally so doing anything can be unsafe. Ive gone through anaphylaxis hundreds of times and every time it’s just as scary as the first time it happened, shout out to all the masties out there fighting this condition. ♥️
I’m in the process of getting tested for MCAS. I get hives, diarrhea, brain fog/fatigue etc every single day. Exhaustion doesn’t begin to cover it! And the confusion of what is happening to your body when it first starts to happen is so horrible.
Wouldn't something like a bone marrow transplant perhaps cure the condision, like it cures blood cancer?
I am with you friend. MCAS is awful! Before I received a diagnosis I kept being intubated but I am so fortunate now, to have a great treatment plan. I wish you the best dear.
😮
I also suffer with it - 22 years. I made great improvement with an environmental physician - going from a universal reactor (allergic to EVERYTHING) to living a pretty normal life. It can be done - don't give up hope! I wish you healing. 🙏
I have chronic migraines which have become scarily common. I had always gotten bad headaches as a kid but the migraines started suddenly for about 3 years from ages 18-21 I was I survival mode and in constant pain. I could barely live on my own and go to class and complete school work. I went on a very strict migration elimination diet, cutting out all major food allergens, tons of preservatives, and processed foods. Slowly I got hours back where I was pain free. After a year I was able to enjoy life a lot more. Eventually I also got put on a medication as well. It still isn’t easy and I still have migraines but I have a lot less and I’m able to actually live my life and not just try to survive. These incredible people sharing their stories give me so much strength.
Heal my headache by Dr David Buchalz ( Bucholz, maybe)
I am so sorry you are going trough this. Do you maintain any diet that helped you? I have chronic migraines myself and it came to 6-7 episodes a month for me. Not long ago my new neurologist found out I'm sensitive to gluten and it can trigger migraines, so I'm gluten free now for a month. It got a bit better, but I'm not migraine free.
I found out my migraines were caused by a histamine intolerance. Took me probably 20 years to figure out. I have reactions to different things, and it will be to things I ate or drank the day before, or earlier in tue day. Sodium caseinate is a huge trigger, then things like MSG, hight histamine foods like shrimp… etc. I hope you are able for figure out all your triggers. The other frustrating thing is when stuff that is safe changes its formulation, then end up not being able to eat or drink it anymore 😢
It does seem more common now, or maybe people are finally talking about it. I've had migraines that would put me in the ER ever since I was 7yo. Im on so many medications, it's ridiculous. Because i have migraines on both sides of my family, neurologists have told me I'm basically screwed for life. I can't hold doesn a FT job because of it. I feel so bad for people who have no other choice. I don't understand how they cope.
I have had migraines since the age of 12 even been hospitalized for one that would not go away! Have you tried cutting msg out of your diet! It is a big trigger for a lot of migraines sufferers!
MCAS patient here. Major relief from weekly IV Benadryl, IV Famotidine and fluids. Also H1/H2 blockers and sodium cromoglycate.
I get iv Benadryl for migraines makes me shake like no other and get cold lol works great for my brother tho
I feel your pain. So sorry you have to go through this but super happy Benadryl is helping you too! Stay strong. ❤🩹
Same except I don’t take benodryl. I take Zyrtec
I have EDS and POTS, but luckily have been able to avoid an MCAS for now. I'm only 21, but I'm hoping to avoid this one. I've already got enough on my plate with everything else I've been diagnosed with.
@@mysticzebra5421As someone who has all 3 can confirm it is indeed a nightmare when you have the trifecta of uncommon syndromes that no one can fix and trying to get in with the specialists are insane my last one I was on a waiting list for over a year just for a consultation was well worth it as cromolyn has kept me out of the hospital and I don’t break out into hives and start swelling up when I go outside or open a window anymore so that’s a plus but trying to deal with just one alone is horrible never mind 2 or 3 it’s like every time I turn around i spontaneously dislocate,I have an allergic reaction,or I’m suddenly passing out or it’s something else to do with one of my other diagnosis’s . Hopefully you never have to deal with mcas on top of everything else you have going on!
Wow watching this makes me so much more thankful about my situation. Two years ago my lips suddenly became allergic to almost every lip product id usually use. It's now extended to some foods. Watching these people persevere is inspiring and humbling.
Eat carnivore diet. Best anti allergic, anti autoimmne diet existing.
The same thing happened to me about 13 years ago. I can only use Carmex now😢 I loved my lip gloss too😭😭
I have MCAS. It took 35 years and about 100 MD to get a diagnosis other than "Crazy Woman Disease"! I can get the mast cell stabilizer, Ketotifen, in 3rd World Countries, but NOT in the US, so I left. Luckily I studied Molecular Biology at uni and can treat myself. You have no idea the damage US male docs did over a lifetime of telling me there's nothing wrong with you. You're just crazy!
I kind of went through the same thing. 28 years of male doctors telling me that it was just anxiety, all in my head, I needed anti-depressants and therapy, etc., and eventually I just got sick of it and figured out what was wrong with me on my own: Hashimoto's Thyroiditis. They were going to try me on anti-psychotics before I got frustrated and figured it out myself.
I've only had 1 single doctor in my entire life who's listened to me. I'm 34.
I get my ketotifen compounded!!
Do you take Sodium Cromalglycate ?
I take cromolyn for my MCAS, and it mostly keeps me out of the ED- is the keto much better?
Sounds like the new ‘I’m allergic to gluten’ explanation for anything that doesn’t have a medical firm diagnosis .
Beth has such a beautiful and precious being on her side. I hope she’ll always acknowledge that. ❤
She does 🥰she's on tiktok IV followed her for a while now
From all these people Ive noticed that it's always the nicest people that are given the hardest challenges
Everyone needs a partner like sasha
My brother has aquagenic urticaria, getting hives and welts all over his body and anaphylaxis. He started a monthly allergy shots when he was formally diagnosed at 13. This shot helps prevent the large reactions and allows him to lead a normal life.
I also have aquagenic urticaria! Definitely a tough one to live with as it makes showers, swimming, sweating, crying, spit, and all other bodily fluids super hard to deal with. Hell I remember crying because my eyes itched so bad but crying made it worse. Im glad he is able to get shots to help with the reaction to it. Mine has calmed down since pregnancy also my allergy to dairy is nonexistent now too. Much love from Texas. 😊
@@emmie0426 thanks for the message, it is nice hearing from someone with the same experience. I remember how uncomfortable he was and the whole body hives. Glad yours has eased a little, post pregnancy. My favourite memory was visiting Disney (about 2 months after he started his shots) and him insisting on going to the water park, we have a pic of him running out of the waves and never seen such joy. It also poured one day and we have pics of him just dancing in the rain as people hid out.
I knew someone in highschool who had aquagenic urticaria. I always wondered if it could be a specific chemical or mineral in the water rather than just the water itself??
I have cold urticaria and it's pretty miserable!
How about drinking water?
@@terrygreen5814 thankfully his medication has made it that he can function normally but prior he could not drink water.
Isn’t odd, that those dealt the hard cards, seem to be happier than those living normally. Maybe because they go through so much pain and difficulties, that when they can do normal things, they appreciate them so much more and never take anything for granted. The rest of us, don’t even think about how lucky we are, to be healthy. Life can be incredibly unfair to some, my son included, who was diagnosed with cancer at age 5. This experience led me to meet some of the most incredible people on the planet, so brave, so inspirational and yet living with huge challenges that most people don’t even consider.
I go though bouts of a painful chronic condition and I'm happiest when I can go back to leading a normal life. It definitely makes you appreciate just existing without excruciating pain.
Yikes. When I was 14 I spend an entire summer covered in hives. I was tested for every common allergen they were able to test for (the one where they cover your entire back) and apparently I’m not allergic to anything! We tried cutting out foods, different laundry detergents, and anything else we could think of. I tried at least six prescription antihistamines, and multiple combinations of prescriptions, but nothing worked. The only thing that gave me any relief was ice water baths. Otherwise I would be covered in thick, hot welts from head to toe. I even had them in my armpits.
Then they went away. It was so traumatic- the next spring I got hives again for a couple weeks, and I thought I was going to lose my mind. I probably cried for like 3 days straight imagining having to go through that again. I’m still a huge baby about anything itchy. I recently went on a trip where I got some mosquito bites, and carried around one of those anti-itch sticks, so I was able to avoid scratching them until they bled, maybe for the first time since my hives episode 25 years ago.
And this is what Beth lives with. I hope she’s still doing well, and that maybe she grows out of some of her allergies with time. This type of allergy situation is so incredibly difficult.
My allergy doctor thinks I might have been allergic to a seasonal virus that either mutated so I didn’t react to it anymore, or I grew out of the allergy.
Wow! What an inspirational group of people. I have a sun allergy, I have to wear spf 50 in the winter and spf 100 in the summer. Instead of boosting my vitamin D, it depletes it and I am left exhausted and in excruciating pain. I rarely go out now, which is fine, I'm almost 58. The Drs think that it's something to do with my Lupus. These young people are missing out on the most important times of their lives. It's incredibly sad.
I’m guessing you have solar urticaria? I was diagnosed with PMLE after seeing a specialist in Boston
Yes it's the immune system and the meds. They say heal the gut. No sugar to lower yeast in body
I’m allergic to the sun too, but I just get hives. My brother wears long sleeves all Summer but I just suffer. The worst are the ones on my hands
@@missybuchanan9631 would you also get itchy if you were to stand near heat? Like an open oven door
Sun 1:07 water 8:07 hair 14:43 everything 21:26 everything part two 29:20 if you need
Thanks
Thx
weird Avatar remake
Beth and Sasha are the most amazing, lovely couple. I wish them all the best.
I have dysautonomia and EDS, I have sensitivity but not MCAS. It’s rough and these people are amazing.
Me too! Hello fellow zebra 👋
Me too. I do have MCAS, but nowhere near this level
Hi fellow zebras!! I have EDS, dysautonomia and also MCAS, but like Craftgrrl14, not this severe! I take Zyrtec and Famotidine to help with it.
Fellow spoonie here! Pots, MCAS (not as bad), ME/cfs, post-viral dysautonomia….. so much fun!
@jenng3649 how are you managing on the famotidine + Zyrtec. I've found its not working well more me.
Glandular fever (mono) triggered my MCAS, I was healthy before. So upsetting and hard to go through, but these people are so inspiring.
glandular fever gave me M.E 20 years ago, it's a terrible virus - GF, does so much damage.
I can relate to a mild degree. I was diagnosed with acute spontaneous urticaria. This means i randomly have severe, but to date, not life threatening, allergic reactions to nothing. I haven't had an episode in a while, so that is great!
cold urticaria for me - large welts and burning itching skin - during a cold windy winter I'll get it in the ears, that hurts a lot.
I hate to say this but demodex may be the cause. Usually immune disorder, steroids and or gut issues agitate our natural biofilm
I've seen a functional Dr and he tested me as I was having lots of random allergic reactions and I have an extremely high level of mould and am taking lots of supplements to help but basically eating sugar encourages the mold etc ..I'm not great at explaining so we are trying to detoxix the mold and then not eating sugar is what helps the most ..and also have lots of issues with mast cell..he also wants me to work on bagus nerve exercises which helps to control mold sensitivity
I am surprised that Lizzie hasn’t decorated her hat setup with something saying “I’m allergic to the sun” or have a circle with a sun symbol and a line through it.
Why should she?
@@whispers._.she shouldn’t have to, but it can feel awkward when you know people are wondering. Like when you are coughing for some reason and you explain to people around you that you aren’t sick, or don’t have COVID. You don’t have to, but it can make you feel better.
I personally think that is an excellent idea. Just having a 🌞 with a line through it is a great symbol
Yeah the symbol is a cute idea and it's a talking point
For Willow’s mom… I’ve heard of “dry suits” for scuba diving. I have never used one so I don’t know how they work. But it might be a way for her to swim or even dive (when she’s older) with her daughter.
Your face would not be covererd.
Her head, neck, hands, and feet would be exposed in the wet suit
I'm allergic to sickness, that's how I call my persistent urticaria. Every time I get sick, a rash (like Caroline's) pops out covering my neck, chest and upper part of my back. The sicker I am, the bigger the rash is... It's super uncomfortable as I have to deal with sickness and rash at the same time. Doctors haven't told me a proper solution except for two pills of anthistamine. I've learn how to cope with it by myself a little bit, but I'd like to have a better solution. I completely understand these women 😣
We very much need to study the relationship between anxiety and allergies.
For real
Yep.
They feed each other. You eventually become so fearful of a reaction…and if you’re not careful that anxiety takes over.
here's the problem with that logic.... anxiety is actually normal. You are born with it. Its a natural defense mechanism and I dont see a correlation between anxiety and allergies. Its more than likely the chemical compound in the medication, not anxiety itself. Its like thalidomide. It started out as a drug to be proven quite dangerous but the chemical compound itself was shown helpful to become other drugs we use today. Allergies can come from a variety of things and you can also be born with those as well. Other conditions, physical conditions do cause allergies too. Genetics play a part in allergies to some capacity but not always. So there wouldn't be much room to study and possible correlation between allergies and anxiety since both by themselves are quite well studied. Especially when you have an allergist as a specialization... they would know by now if there was any correlation and so far there isn't. When anxiety is natural and normal and most people can control it and yet can have allergies, even life threatening allergies at the same time. Its not really something worth studying because I cant see any reason for such a relationship that logically wouldn't exist. Otherwise you would see some serious problems in people over several generations by now. With modern medicine, they could have found this out 100 years ago easy.
@@Skatejock21 Well, what if the allergy caused anxiety in the person and there is a vicious cycle going on? That’s what I’m trying to say. High cortisol levels and histamine causes anxiety which is also caused by allergies. That’s what I’m getting at.
I have Ehlers-Danlos Syndrome, and MCAS is common amongst the EDS community. One woman has it so bad she's allergic to her husband! It's tragic.
How are people getting the diagnosis? From an allergist?
@breadroomghost8764 these things are so difficult to diagnose, it's usually multiple doctors and specialists. I was diagnosed with Ehlers-Danlos by a Cardiologist with specialization in autonomic dysfunction and a neurologist working together.
@@amandamccallum6796I have EDS and POTS
I have MCAS as well and it helps so much to see other sufferers thriving. My family basically kicked me out instead of dealing with my allergies. It’s wonderful to see other people getting so much support ❤
I’m so sorry
I have Cholinergic Urticaria, allergies to heat. I do understand what they're going through. If I get hot for a second I start to itch. If I'm out in the sun for too long I get hives. Not fun. I can't even exercise. When I cook I need to turn on fans even in winter.
I have cold urticaria cold air and water cause hives and itching. I guess most people grow out of it, but mine has only worsened with age. My last bad episode was right before I was diagnosed with thyroid cancer. I broke out and it was 70 degrees.
I have cholinergic urticaria too
V from BTS has this condition, too
34:20 I have mass nerves rewiring throughout my whole body and only got diagnosed with Marcus Gunn syndrome. If I walk for longer than 20m my legs are on fire. This is so real and thank you 🖤
Natasha is beautiful inside and out. Even without hair she is gorgeous and I understand being stubborn. I have a lot of allergies although nowhere to her level. I was working as a paramedic when I had my first anaphylaxis and my coworkers saved my life. It was freightening and having to take epinephrine was the worst feeling because it gave me very severe chest pain. I’ve had anaphylaxis to IV iron which was horrible! Had to be admitted overnight many times. I wish everyone the best in this video!
Lizzy has an allergy to sun rays. She gets cancer if exposed. I am truly impressed with her as she finds ways to be safe going out, and she has had many surgeries for this. There are no scars on her face that could see. I'm glad for her. Having that allergy must be horrifying for both her parents and herself.
Y is she wearing black ????
Lizzie is a sweetheart!
"You are perfectly imperfect" My new motto!
I also have oral allergy syndrome (now called pollen food allergy syndrome) that has turned into mast cell activation syndrome. MCAS is a NASTY disease! There are cases that are better and cases that are more severe. As of right now, mine is pretty mild, but then again you can't really ever call MCAS "mild". It's absolutely terrifying being able to have an anaphylactic reaction from anything and having no idea what will become your newest trigger. And what the young ladies here didn't mention is that mast cells release other mediators other than just histamine. Heparin, there's a type of cytokine called TFN alpha, so many things that can cause even more symptoms other than allergies! Often my more "mild" MCAS reactions are me getting horrible joint pain, muscle pain, and other symptoms that would make you think you had a really bad cold. Except that it's not. It's just your mast cells going crazy when there's actually nothing wrong at all.
I also have a quite rare allergy that the doctors didnt know about either, its called phytophotodermatitis (i prob spelled that wrong) it means if i touch my allergy (citrus) while out in the sun, i will get burns (it happened when i was like 2 and i got 1st degree burns all over my arms) the burns that it gives me, last for 6 months… and yes ik, these people have it much harder, im just saying that the doctor didnt know about mine at first. If you read all of this, ty!
That's so crazy how someone can be allergic to their own hair growing but not make-up or synthetic materials. So weird how our bodies work.
17:20 Is that foil in the microwave... and it's not catching on fire!? What sorcery is this!?
Probably aluminium. Quite safe in the microwave
I was wondering the same thing!
I have SLE and Discoid Lupus. Instead of the sun causing problems with my Lupus, it actually helps me immensely. It does the reverse from what most people with lupus experience. If I don’t get enough sun, my joints, muscles etc are very painful. With Discoid Lupus instead of the sun making my rashes worse, it helps heal them. If I don’t get more sun than the normal person, I develop rashes due to Discoid. My heart goes out to her. I couldn’t even imagine. I don’t know what I would do without being outside in the sun all times of the yr. I spend more time outside than inside. I wouldn’t be me without the sun.
Oh my God, Lizzie. What a beautiful, beautiful person. How lucky are all of her friends and family, to get to spend time with her! She's absolutely delightful.
Having cold urticaria which appeared after a prolonged case of giardia - I understand how difficult it is to change the way you live.
I too have cold urticaria and live somewhere where the winters can be severe so I agree with you as well
Same for me as well! Can’t try and shovel snow unless I’m in 5 layers and even then I still get hives. Even washing my hands in cool water forget it 🤦🏼♀️ and yet I live where the winters are disgusting!
@ I’m glad mines not that bad but still sucks. Sorry to hear girl. Don’t come visit Chicago in the winter it SUCKS
I developed this spontaneously after a year of severe stress, but luckily it went away after a few months of fish oil supplements. It was winter and my hot water service was dodgy, so I lived in fear of taking a shower and having the water suddenly cut to cold.
@@clockworkhearts4085 it's painful isn't it - Im in my 17th year of it!
Was born a preemie and at forty five I still have health conditions that I didn't know about being diagnosed with anxiety p t s d is not easy but sharing your story is something that makes you really savage
..Thank you for sharing
It's awes8me to see what couping things all these people do to just survive. They are so strong and great influences for me.
I'm over 50yrs, & I've been allergic to most things in life. From Trees, grass, Pollen, Mold & Mildew. I have to stay away from a lot of foods that most ppl eat normally. My sons inherited food allergies as well. Last year, I found myself having anaphylactic symptoms with the sesame seeds on a bun. I'm allergic to most meds & antibiotics. I'm so glad I have a name for my symptoms!!!!!
I have a rare condition to. It is a mitochondrial disease and has made me legally blind and have chronic pain and have significant hearing loss
🫂
Oh dear ❤ much love and many blessings for you 🙏
"Shed light on her condition" 💀
lol
This 😂
I know!!! That was so low key brutal!
ohh mann i could not stop laughing thats messed up😂😂😂😂😂😂😂we
Lizzie needs to have an umbrella at all times.
I don't have that terrible disorder, but I burn so fast that I always carry an umbrella and I have for years.
Beth never addressed the wheelchair or canes… presumably it’s related to the allergies/the strain on her body?
Likely has POTS from it
What is POTS? I'm so sorry I am not very educated with this and would love to know please and thank u
@@amyletcher8165 Postural orthostatic tachycardia syndrome. Basically, your heart rate skyrockets when you go from sitting/laying down to standing and can result in dizziness, fainting, brain fog, and other similar symptoms.
I have pots and more. I have to drink a lot of Gatorade. @xassylax
@@xassylaxThank you for the definition. I was wondering also.
I was allergic to water during my pregnancy. It went away a few months after giving birth. I don’t know what I would do if it came about after giving birth and stuck around. It was absolutely terrible. It drains your energy so much. Sweating and crying even set it off. And all I wanted to do was cry about it 😢
I got bipolar and don’t handle that well any of these people are superhero’s I wouldn’t be able to deal with these and they seem happy and fine mostly bet some days are hard but they get thru it prayers for all of them but wow I’d be proud to be there parents
I also have MCAS resultant because I was born with hypermobile Ehlers-Danlos Syndrome. Mine isn't as severe however, I do have the same symptoms: randomly triggered histamine reactions, I'm often incredibly itchy, I get blisters on my scalp, legs & armpits where there is hair & they take weeks to months to heal, headaches, LOW blood pressure, Neuropathy, hives. Stressors, anxiety, undue pressure, conflict, illness, and most plants cause nasty flare-ups. I have had anaphylactic reactions 3 times so I have to be extremely careful.
About a year ago I started noticing I was getting hives randomly. Checked all the usual culprits (soaps, perfumes, etc) and started paying attention to what I was doing each time. We noticed it seemed to happen when I was in front of a fan or after a shower. Those two things seemed unrelated. Then I went swimming but the water was pretty chilly still. I got out after 20 minutes because I felt weird. I broke out in full body hives and nearly passed out on my mom because my blood pressure had apparently plummeted.
Turns out I'm allergic to cold.
I went to an allergist and found out I'm actually allergic to every tree, grass, weed, flower, cats, dogs, birds, and even cockroaches. Being allergic to cold was actually a hyper reaction at that point. I have to take three allergy meds a day, I have HEPA filters in all my rooms, the windows stay closed, and my allergist advised me to wear a mask when outside and to shower and change my clothes when I get home.
I still consider myself to be lucky. I feel like my symptoms are much easier to control then these folks. I can't imagine what they go through daily.
I have aquagenic urticaria. It is an awful condition. If I get wet or even sweat I itch so intensely it drives you mad. I also feel like I’m on fire. Someone told me about taking beta alanine prior to exposure to water and it helped immensely. It is a true game changer. I can now shower without agony.
My grandma has this type of allergy where she’s allergic to salicylates, which are in a whole variety of foods and certain medications. Not sure how common that is.
Beth and Sasha - what an amazing young couple ❤
I noticed that Beth was wearing a Bar Harbor, Maine t-shirt... That's right by my hometown! One of the most beautiful places in the whole world! ❤
As someone with a medication allergy, I feel so bad for people who are allergic to things like these. I hated having allergic reactions each time a doctor doubted my allergy.
I can definitely relate to that. I can take penicillin & benadryl by mouth but not in i.v. or shot form & have had medical people tell me that it's not possible to be allergic to one but not the other.😢
Me too, all pain meds derived from opiates, have asthma so can't take ibuprofen. Lots of food allergies the rarest is citrus. Had both hips replaced awake with spine blocker, no pain meds allowed other than paracetamol. My surgeon said if I ever get cancer I'd never be able to have morphine etc.
I have a Rare DIsease as well! It's called Varigate Porphyria or.. VP. It has some other symptoms as well, but ALSO has the sun issues like the XP lady! They are in the same family, but XP is much more severe with the sun problems.
Only this year I developed a reaction to iodinised contrast for PET scans, first 11 days to react, then 6 hours, so now they have to dose me up from the day before. If it happens it is 7 days of horrible red weals, hives and itching head to toe. The ladies living this 24/7 are truly courageous souls, and very brave.
I just developed a reaction to the contrast for the Pet /Ct scans and I have to have them every 3 months ( I had cancer and I was just declared cancer free in May)! I am at high risk for reoccurrence so my dr is following me closely
My allergies aren't that bad but growing up in a small area where no one else had mine level of allergies I can relate somewhat! 😢
Couple of my family members called me the bubble girl back in the 80's.
Im allergic to the cold. It started out with sneezing and over the years it has gotten worse. Sneezing and hives and now, this year, asthma symptoms. I have to use an inhaler after going outside in cold air and it's not even winter yet. I'm really worried.
God Bless everyone who has to endure these uncontrollable allergies. ❤❤❤❤
Caroline is so sweet and beautiful. And thin! I can't believe anyone would say otherwise. Her mom is a dear.
What a strong, inspirational bunch of people in this video. I wish them all well. Also, a love like Sasha & Beth please
Have it an autoimmune disorder and being diagnosed later in your life.I didnt know, you're allergic to sugar.A lot of different things really?Makes you feel sad but then you find out what you can't have and what you can do to substitute it as the purpose of life work, makes it worth it for you
17:24 AHHHHH TIN FOIL IN A MICROWAAAAVE NOOOO
I loved showing this to my daughter that does gymnastics ❤
I have MCAS. It's torture to live with. I've lost most foods now. I react to products, smells, hormonal changes, temperature, and my "safe" foods, and things can change at any given moment. I hate living with this.
I went to school with Lizzie! This was quite a surprise seeing her image and story come up!
Humility is not describing it even in the depth of emotion. I am being humbled. For sure. The sheer resilience and willingness. May we one day learn from you.
I have MCAS, POTS, Hypermobility, Fibromialgia, ME Chronic Fatigue Syndrome, plus a lot more. I am even allergic to oats. It is a scary thing. This video is amazing at spreading awareness.
I can empathise, i too have many allergies, the worst is allergic to my own sweat, joy !
I have an allergy to lavender…….if it is growing and in flower, it makes it impossible to breathe as my airways swell up, and constrict the air in and out of my lungs. If it is ‘natural’ but added to a cleaning product or perfume the results can be hospitalising. I try to avoid it at all costs but it can be challenging.
I also react to oranges, splashes on my skin causes blisters which eventually burst and heal as white scars, my forearms are covered in them. I dread to think what would happen if I drank orange juice or ate it.
Allergies which are out of the normal are often disregarded by others…..I used to teach and my learning support worker was told about this, but spritzed the oil as a spray to help her with anxiety in my classroom and put me in A&E twice.
School disciplined me because I sent her a private message asking her to not do this again, or ask if she can swap students to support and avoid my classroom as she practically bathes in the stuff at home. School had asked her not to use it in my room but refused to take on board the fact that it permitted everything she wore and would cause the same reaction every time she was in my room, which would mean more A&E visits and a few days at home after each event to recover……
Having been treated by ambulance staff in the school office twice, the situation did not improve so the union became involved. Eventually the stress was too much and I lost my ability to speak for two years and was given a severance package……take allergies seriously!
Sasha also has Mast Cell Activation Syndrome. Unfortunately most doctors don't know anything about the illness so you can go decades without a diagnosis. It took me 20 years after suffering terribly - being told it was all in my head - it was stress, and was sent to psychologists & psychiatrists. Unfortunately none their medications lessened my reactions & actually made me even worse, so I knew it wasn't mental. I finally found an environmental physician who helped stop the severe histamine release and resulting reactions which allow me to live a much more normal life. My heart goes out to these two ladies because I've been where they are and it's the most life altering and frightening illness you can imagine.
I've been experiencing this issue myself. I haven't yet be fully diagnosed, so thank you for letting me know that I'm not alone. I also want to point out that there weren't any men experiencing this. Coincidence?
What issue? Also, I do find it strange that there were no men experiencing any of these issues.
@@VariantAECThere is a man in Australia with an allergy to cold water. He was shown on Bondi Rescue.
Women have stronger immune systems (presumably because we are the ones that can get pregnant) and therefore the majority of immune dysfunction sufferers are women. And because of medical misogyny, immune disorders, like most other diseases that primarily affect women, are under-studied.
The older I get more allergic reactions. I can no longer eat night shade plants or red meat and now chicken. I have other immunity problems that will keep me home rather than going to the grocery store, the local market pharmacy which has a whole section of perfumes and cosmetics that I’ve always had problems with. Even as a teen I couldn’t wear makeup with out my mouth drying out and me eyes becoming extremely itchy.
I’ve lost on many adventures but I would rather be safe than sorry. Very good info in this video.👍👏🏠
In 2005 my adrenal glands failed. I survived, but not without permanent issues. One being a new allergy to water! At first, it was to even drinking water. I could only shower once every 2-3 months and had to keep olive oil on my skin at all times. I had extremely dry skin with consistent hives. Not able to sweat and no body odor or oils. 19 years later, I can drink water, but showers are still very painful. Like, cactus and hives for weeks. I have yet to find a doctor that knows what happened and how to fix this.
All of these people are very brave. Keep up the great work ❤
Watching this has put so much into perspective. I will never whine about ragweed or maple pollen again. Seasonal allergies are nothing compared to the suffering in this this video. At least I get a reprieve during the cold winter season, no matter how miserable I feel the rest of the year. ❤
all of these people continuing to live their life is why disabled people are the strongest mentally. people who aren't disabled look at them like they need pity, but in reality they're like....i can live my life too even if there's restrictions
It's nothing compared to XP or any of the others but when I stay too long in the cold, or when my body gets too cold, it starts to break out in hives.
It lasts for a a week or so.
I hope Lizzie knows how bright the light she radiates is!❤
These people are total badasses!! You never know how strong you are. until you have to go through something.
Lord Bless everyone with severe allergies I'm siiting here looking at them my body is very itchy broke out badly from my food acid allergies it feels like ants, bees biting under my skin I'm irritated too
Aw im sorry . I hope it can vet better . Stay strong
i get hives all over my body every morning. i’m not even sure why, but the hives get worse when i touch water at all (that where allergy pills come in). it must be horrible to be allergic to specifically water and have to deal with that with a child in your care as well.
i love lizzie, her attitude towards life, people, everything. she’s an amazing person and i hope she’s doing well. ps i LOVE the colour of her hair!
I have a fragrance allergy (I believe it’s actually common to varying degrees + it’s terrible for us all but many are in denial or would never consider it) and it’s sooo hard to get family, friends and co worries to remember, understand, care or sometimes believe it.. and fragrance is EVERYWHERE
All of these girls are absolutely beautiful and amazing. ❤❤
I also have MCAS it is a very tricky disease. I live in Sweden and I get allergic to the cold in the winter my face gets full of hives. And if its very cold for a long time I usually get pneumonia since my lungs gets very irritated. We have a lot of mast cells in the lungs. And I also have a lot of issues with food, but I have found ways that make my body stronger so nowadays I can tolerate most things better.
These are so interesting. I get a reaction to water on my forearms if I get a small amount of water on them (like a sprinkle), but for some reason if they are fully submerged or wet all over, I do not have this issue.
I've had tin and dairy allergy from I was a child. At the age of 28 when I was pregnant with my third and last child, I developed eczema.
As the years goes by, I developed quite a few more food allergies.
I'm also allergic to the sun, but very great full that only mildly.
As a chef, I had to resign my job at the age of 41.
Yay for MCAS (mast cell activation syndrome) awareness! So many doctors don't know to recognize it, but it's more common than you'd think.
As a child to young adult, I was allergic to extremes of hot and cold, sunlight, my own sweat, all grasses, mouldering leaves, almost all foods at one time or another (but not peanut butter). There were no epi pens then. I had to go to the ER for epinephrine shots. And contact. I still have this. Contact with my skin causes large abrasions. And infection. If I had an infection, I would get hives. Everything caused huge, thick, itching hives all over my body. By my forties, I had moved to Southern CA, and my hives began to quiet down. Allergies can wax and wane sometimes.
Been following Beth for ages on tiktok she is such a lovely girl
Its moments like this where i am very thankful that my allergy is more annoying then life altering like this. This is truly humbling and mind opening to how insane the human body is.
(For those wondering, I have an extreme metal allergy with iron burning my skin like im touching fire. Other metals give me hives)
My friend has a rare condition where she can be allergic to something one day and then not be allergic to it the next day and she can be allergic too every thing
I might not have any allergies but my friend is actually allergic to milk and flour so it’s actually painful to see your friend not being able to eat cookies like we did when we were young but she still laughs smiles a lot so I feel like I should not give up something I was doing so good luck with those allergies ❤
I would actually die for Sasha and Beth. Sasheth for life.
MCAS isnt that rare. I live with it due to Ehlers-Danlos Syndrome. A high percentage of us do. It SUCKS so much. More recognition is really really needed. We need to stop seeing it as a rare disorder, otherwise doctors wont learn about it
God bless all of these beautiful people. Give them strength to continue to be the heroes and roll models they are 🙏🏾❤️