Living with Lupus
Вставка
- Опубліковано 29 вер 2014
- Lupus is a disease where the immune system becomes over-active. It is a chronic disease which affects one or many tissues of the body; skin, joints, muscles, blood vessels, blood cells, brain and nerves etc. Inflammatory and immune responses account for many of the symptoms observed in lupus.
Due to its many varied and often invisible symptoms, lupus can be very difficult to diagnose. It currently takes an average of 7.5 years for a patient to reach diagnosis.
Please share this video to help raise awareness of this condition.
You can learn more at www.lupusuk.org.uk
Further information on the evidence sources used in producing this video can be obtained from
LUPUS UK National Office by emailing headoffice@lupusuk.org.uk
Most heartbreaking thing about Lupus - You struggle on for ages by yourself so that you don't bother anyone or become a burden, but just when you reach breaking point you finally summon up the courage to actually reach out to friends and say you're really struggling... only to get a few passive kind words and then no follow up, ending up feeling even more alone than before. I used to have so many friends who seemed to really love me, but now I'm feeling like no one is interested in being a committed friend. I hate how much Lupus affects relationships. I'm sure you all understand.
Robert Collins This honestly saddens me.
I'm so sorry you have to deal with this
i feel the same... people ask me how i feel and no matter how much it hurts i just say i’m fine bc it’s not like they can do anything to really help me feel better
How does it affect you cause every patient is different in terms of physical and mental?
This is so true. Lupus has changed my life so much,not just physically but mentally too because I can feel all my relationships slowly fading away. I don’t even talk to my parents about it because I don’t wanna trouble them. It’s gets really hard to keep everything inside of you and pretending everything’s alright while battling the pain.
God bless all of the sufferers of lupus 😔❤️
Thank you!!
I m also sle patient
Thank you❤️
@Smarty Kate maybe you believe in “natural herbs” but not all people do:) please respect other people’s beliefs and forms of treatment. Vitiligo and lupus drastically affect people’s lives. Also you can’t cure herpes!:)
Selena gomze ( dunno how to spell her name x
Just because I smile doesn't mean I'm ok. 💜
I got diagnosed with Lupus this year. Its changed my life. So many bills,pills and symptoms. Every part of your body hurts. You get exhausted after taking a shower. Im 35 and sometimes my body feels like its 90 years old. I live in America the UK has universal health care which can be a blessing.
Totally understand, I'm 19 but my body is 90. Living in a tropical country with lupus is quite a challenge
No it’s not a blessing you wait months and months to even be referred to the right pathway to then be fobbed off
I recommend Dr.Auchi on UA-cam channel for saving my life from Sle Lupus disease 🦠, when I use the herbal remedies I get from Dr.Auchi. I was totally 💯 cured completely..ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html ,,,
Wow Ashley - you are describing what I am feeling being diagnosed with lupus this week. Unfortunately I also have crohns which is very similar pain joints.
I wish you well x
Lots of loves and supports to those who are suffering from lupus like me.
We are strong. We may have this chronic illness, but we are not defined by it. I have been living with Lupus for a few years now and am going through a flare up at the moment. And everyday is a struggle. I'm 4 weeks away from graduating university and continue to fight through it.
I really liked this video, it makes it easier for people who don't understand what we are going through, to be able to help, my biggest problem is being told I'm just being lazy, or not trying to be positive. If only people really understood the internal battle I struggle with.
+Melissa Leon I'm glad to hear that you like our video. Good luck with the last few weeks of university!
LUPUS UK My mom has lupus :((( ;-; i dont want her to die 😭😭😭😭😱😱😱😱😰😰😰😨😨😥😢😢😢😪😪😓😓😓
DJ YoJEkkiMUsix I hope your mom gets through it but very rarely do people die now from having lupus if they have treatment.
Hi. I'm sorry to hear that your mum is unwell. It is very rare that people die as a result of having lupus now and most people will live a normal, or near-normal lifespan. Is your mum on treatment?
Melissa Leon thanks she's getting a bit better
The hard part about being chronically ill with SLE is that people can’t fathom the *CHRONIC* part. They expect that you’ll ‘feel better soon’. They minimize and deny because they can’t acknowledge that chronic illness could strike anyone, including them ~ and affect their lives in ways that are beyond their control.
Lupus negatively impacts all areas of your life and relationships!! Advocating for lupus patients is vitally important. Awareness is key!! We no longer need to suffer in silence...
Great information!!!👏👏👏
I'm a huge selena gomez stan and i watched her latest cooking show where she couldn't squeeze a lime so she called her grandpa instead she expressed how she was sorry about it and that it was dur to her disease wich got me even more interested to know where she's coming from and what she's struggling bcz she's been a big advocat and doner towards lupus facilities and it seriously breaks my heart that people like her have to suffer from all of this many of them in silence especially that she's a big popstar often expected to be active and energetic but tabloids are bashing her without knowing all of this!!!! God bless people suffering in silence❤️
I know same! I remember hearing her having a kidney transplant back in 2017 before I was a fan of hers. For some reason I got really interested and started looking up about lupus. After that I became a huge fan of hers. She's very opened about talking about lupus. I remember I felt really bad for her when I watched Selena and Chef and when she does her make up her hand keeps shaking because of her Lupus. She goes through so much and people still make fun of her illness. I think she is so inspiring on talking about her mental health and encouraging others❤
I recommend Dr.Auchi on UA-cam channel for saving my life from Sle Lupus disease 🦠, when I use the herbal remedies I get from Dr.Auchi. I was totally 💯 cured completely..ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html ,,,
I knew a bit about lupus already, because Selena Gomez has it. But now I understand it even better.
I was diagnosed recently like during the pandemic and I thought it,was,the end for me but miracles do happen and I was really struggling and I know everything will get better
Me too 😥
As a type one diabetic, which is autoimmune and chronic as well, I feel with this video a lot. One of the most annoying parts for me is people telling you what you should feel and manage what you’re doing.
Some days you just get so annoyed of having to bend your life around to accommodate to a stupid disease. I love you all.
I have been suffering from lupus since 2017,yes smtimes I badly sufferd in pain on various parts of my body but I never give up.I have enough blv on God nd with this disease I have cleared my graduation last year nd now I m studying GNM nurshing course.I hope I too will live such a normal life like other people.For all lupus sufferers never lose ur hope,take care urself always nd be happy ❤️🙏
I recommend Dr.Auchi on UA-cam channel for saving my life from Sle Lupus disease 🦠, when I use the herbal remedies I get from Dr.Auchi. I was totally 💯 cured completely..ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html ,,,
I am also suffering from lupus(SLE) I have 2 yr baby.. After delivery I am suffering from this desease.. 😢Iam really afraid of this because I have many medicines but there's no rest for me.. I feel sad everyday because of this... I lost my beauty also.. Swelling under eyes and protein goes out with urine.... There are many peoples here also same as me
Please tell me if you have these symptoms?1 Swelling under eyes and lips.. 2 protein goes with urine 3. Feeling very sad inside that can't explain how 4. Weakness
Yes I have rashes in my breast,face,neck nd back,,, suffering in pain.. suddenly became anxious nd depressed without any reason...much protein in urine...I became sad suddenly...I dnt knw why
This video is so helpful I always hate when people tell me I don’t look sick or I just need to think more positive and I’ll feel better it’s just not that simple
My wife suffers from Lupus, literally just diagnosed. She used to live in the UK but there whenever she went to the hospital because of the pain they'd claim she was seeking attention and never believed her. They never tested her once. First thing they did here in Brazil was test her for lupus and it was confirmed. The UK public health is a joke.
I'm sorry to hear that your wife had this experience. Unfortunately awareness of lupus does still need to go a long way, especially with health professionals. It is very disappointing to hear that this has happened, but I am glad that your wife has now had a confirmed diagnosis so she can be monitored and treated appropriately.
I am writing this to thank you for your product (Herbal Drink) I was diagnosed with lupus Diseases. At a recent visit to my doctor discussing this his nurse recommended your tea. She said that she and her husband have been using your tea and were satisfied with the results. I have also have other family members and friends using your tea as well. I also find the insert pamphlet very helpful with gaining information about the tea you can also get in touch with him facebook.com/Dr-Ijumenren-Herbalife-344760579929730/ Again, thank you for your product.or get him on email dreromoseleherbalroots@gmail.com
I really wish people understood this! I was diagnosed at the age of 9. I'm now 20, and due to the lack of doctors I've received hardly any treatment. Most doctors in my area have refused me because of how young I am. They think I'm wasting their time. People never understand. They tell me oh just be happier, do more for yourself, you're just lazy. It's so hard. Due to having to find a new rheumatologist, I no longer have specified meds. My kidneys are damaged as is, but the constant pain killers don't help. I wish more were informed about this. It really affects lives.
Hi Judith,
I'm really sorry to hear that you have had difficulty finding a suitable doctor to take responsibility for your care and this has affected your treatment and health as a result. Do you have a good rheumatologist now? If you need to find a lupus specialist near to you, we may be able to provide some information to help with this? Just let us know what area you live in.
I have been diagnosed with lupus at the age of 10, and then the doctors gave me some medicine and I feel absolutely fine like bro, what? If you feel tired ALL the time then idk what to say, but i feel just fine, living with lupus isnt hard AT ALL. You dont feel tired as long as you don't go in the sun, and eat healthy. At least its how it is for me. There is no need to make a big deal of it, because you can live COMPLETELY normal with lupus. It's true, you do feel tired and destroyed, until you get the right treatment. Three years have passed since I was diagnosed and for those three years i NEVER, i repeat, NEVER had problems with tiredness that weren't normal. All i've been doing is eating healthy and staying away from the sun. I dont get how do you always feel like that? I have completely healed from it...
And I am a very energetic person
I'm really glad to hear that you've had such success from your medication and it has kept your lupus well under control. Unfortunately, not everyone responds to medication so well. Lupus is a disease which varies significantly between individuals and many people experience extreme fatigue which doesn't respond well to treatment.
You should not minimize or generalize what others should feel. Wisdom teaches you that.
I’ve been struggling for 17 years. Glad your experience has been so easy.
i’m officially 26 years old..just had my birthday yesterday...living with Lupus for 4 years now...thanks for this video really helps me a lot..💜💜💜💜💜
I recommend Dr.Auchi on UA-cam channel for saving my life from Sle Lupus disease 🦠, when I use the herbal remedies I get from Dr.Auchi. I was totally 💯 cured completely..ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html ,,,
I’m being tested for this now I have all the symptoms it’s absolutely horrendous
I've been searching for a video that can fully explain this lupus life, and this explains it so much better than I can - THANK YOU.
I recommend Dr.Auchi on UA-cam channel for saving my life from Sle Lupus disease 🦠, when I use the herbal remedies I get from Dr.Auchi. I was totally 💯 cured completely..ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html ,,,
It's really nice to see videos like this. My mom was diagnosed with lupus over thirteen years ago and most people we meet have no idea what it is.
Em Custard my mom just recently got diagnosed with it and I wanna be helpful and understanding but sometimes it's frustrating any tips?
my mom has been struggling with lupus for around 7 years now, along with fibromyalgia as well.
it's extremely difficult for her to literally just live a normal life.
her primary doctor literally decreased her pain medication last year. it really does make you feel helpless when you have lupus because people won't fucking believe you or think you're just lazy.
she also visited a rheumatologist last year and said that my mom's lupus wasn't active. like what the hell? you're literally a rheumatologist telling someone with lupus and fibromyalgia that the lupus isn't active.
she's gonna visit her again in february, but i doubt she'll help my mom this time since she literally did nothing last time.
thanks for this video, it actually helped me learn a bit more than i already knew about lupus.
my heart goes out to all of you struggling with lupus, and fibromyalgia if you have it.
I never know anybody who has it..
But whoever has it may God bless you and stay strong !!!!!!!
My mom has lupus and it's really hard to deal with. It can be overwhelming. I try to encourage her and help out as much as possible.
My mother died from Lupus in 2013. It could’ve been cured if the doctors had figured it out earlier but she was sent hospital to hospital because the doctors couldn’t figure what it was.
I'm very sorry to hear that your mother passed away as a result of lupus. Sadly it is often difficult to diagnose the condition. We continue to try and raise as much awareness about the disease as possible so that people are diagnosed and treated quicker.
So sorry ❤❤❤❤
I recommend Dr.Auchi on UA-cam channel for saving my life from Sle Lupus disease 🦠, when I use the herbal remedies I get from Dr.Auchi. I was totally 💯 cured completely..ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html ,,,
I became really interested in this disease after I herd that Selena Gomez has it I have been watching videos about it all day to understand how this lupas works god bless whoever is battling this❤️
I recommend Dr.Auchi on UA-cam channel for saving my life from Sle Lupus disease 🦠, when I use the herbal remedies I get from Dr.Auchi. I was totally 💯 cured completely..ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html ,,,
Thank you for this. I hope people understand a little more about the internal struggle we have to go through everyday.
Thank You for this! I suffer from lupus and just watching this gives me hope.
I might have this condition. People who have this condition are going to be laughed at and even threatened to be put in mental hospitals to die there be labeled as "delusional" 'demented' and "insane". People with Lupus feel they have been abandoned, alone. They will end up committing suicide. It's should be a hate crime for those who laugh at people with Lupus..
Lupus victims need to be heard not shunned.
+Jtaylor1 Awareness and understanding of the condition is improving a lot, but unfortunately there are still a large number of people who need to fight for their condition to be recognised and diagnosed correctly.
Mental health is very important as well just pray and talk to GOd
I don't feel so alone now
This is a really helpful simple video for me to share with my family and friends. A few of my family and friends understand, they are wonderful. But a lot of them don't get it at all, I get the "But you look great!" thing all the time. I did share the spoon theory round with all of them. I sent it to 16 people. Only 6 replied. Maybe this will help them understand a bit better. I've been in a really long flare for months and I think they are giving up on me. Thanks for making this video and for all the work you do. ☺
Hi Joanne,
I'm really glad that you like the video and think it may be helpful in getting more of your friends to understand. Let us know how you get on. We have another video as well which you may also find helpful for this purpose - ua-cam.com/video/NRTaK8hT8po/v-deo.html
I hope that you get over your flare soon and start to feel better. Take care.
- Paul
I am writing this to thank you for your product (Herbal Drink) I was diagnosed with lupus Diseases. At a recent visit to my doctor discussing this his nurse recommended your tea. She said that she and her husband have been using your tea and were satisfied with the results. I have also have other family members and friends using your tea as well. I also find the insert pamphlet very helpful with gaining information about the tea you can also get in touch with him facebook.com/Dr-Ijumenren-Herbalife-344760579929730/ Again, thank you for your product.or get him on email dreromoseleherbalroots@gmail.com
im 22 and got diagnosed with lupus yesterday. i finally know the reason why my body always hurt and constantly feeling tired. actually its scared me when i googled how worse lupus can affect someone life.
this video describe my feeling so well anyway, thanks
Thanks to Dr.Auchi on UA-cam channel for helping me with his herb 🌿 to cure my Sle Lupus disease 🦠 ,now I am completely cured from Sle Lupus disease. Doctor you are the best I have ever met, he is really great herbalist doctor, he has cure for another disease and infection with virus in the body, His herbal medication is 100% guaranteed without side effects in the body, visit his UA-cam channel ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html
This video is awesome to help those that don't understand. Thanks so much for this.
Just recently got diagnosed with Lupus and Im pretty sure this destroyed my dream of joining the national guard. Truly a devastating diagnosis that has taken so many opportunities from me. :(
I like this video;my Dad was a sufferer and most people have no idea what the symptoms are and the varying degrees to which it effects people.It is a good introduction to the subject.
Hello, I like the video very much. I think that it could help my friends and family to understand me better. It is a very good summary of my feelings that usually are difficult to explain.
For our information, UA-cam can easily show and translate subtitles to several languages in SUBTITLES/CC and SETTINGS.
Keep it up, my friends of Lupus UK, you are doing it very well!
My mom passed away from lupus. Actually, a cerebral hemorrhage and she had an extremely low platelet count. It really affected her brain - it affects everyone differently, but with my mom, it was her brain. I grew up watching her suffer. I remember her having red dots on her skin that would become more noticeable when her lupus flared up (Vasculitis) and how she'd have tons of cold sores in her mouth when her lupus was flaring up too. I didn't realize how much pain she was in when I was young, she always tried to hide it.
Hi Melannie,
I'm really sorry to hear that your mum was badly affected by her lupus and I'm sorry for your loss. If you ever need anything, please let us know and we'll do our best to be of assistance.
I’m getting my blood work done on 11/8/21 to be tested for Lupus. I’m 54 years old and for about the past nearly 10 years
I have had the blotchy skin. I’m post-menopausal so I have lots of hair loss, but I have very thick hair so gratefully, it’s only noticeable in the hair brush.
I have started to have debilitating headaches with severe neck pain. I also noticed that just today, being out in the sunlight, it was hard on my eyes like I had some sensitivity to it. I feel extreme fatigue in the evenings after work. The funny thing is they say it’s not contagious, but what’s weird is
I have two close friends who also have been diagnosed with Lupus.
Thanks to Dr.Auchi on UA-cam channel for helping me with his herb 🌿 to cure my Sle Lupus disease 🦠 ,now I am completely cured from Sle Lupus disease. Doctor you are the best I have ever met, he is really great herbalist doctor, he has cure for another disease and infection with virus in the body, His herbal medication is 100% guaranteed without side effects in the body, visit his UA-cam channel ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html
Very nice and informative video. I suggest adding subtitles because often such kind of videos are watched by people from non-English speaking countries. =)
Hi Gio. Thank you for your suggestion. We have now added the English subtitles, hopefully this will help a bit. Unfortunately we don't have the skills with other languages to do subtitles for other non-English speaking countries right now.
Thank you very much =) Since the advent of 'Google translate' I don't think it is necessary to add subtitles in other languages. I appreciate your effort =)
This video is very well done. Thank you.
Simpel video and tight on the point, thanks
I have the same problems as you do. Cute video
WOW - thats me! and my name is LAURA too!!
What a great video...thank you!!
I’m talking to a woman with lupus. What should I know? I’m clueless😣
Hi Jeremy. Have a look at our website (www.lupusuk.org.uk) for more information. You could consider joining our forum and asking the community for any tips too. You can join for free at www.healthunlocked.com/lupusuk.
Thanks to Dr.Auchi on UA-cam channel for helping me with his herb 🌿 to cure my Sle Lupus disease 🦠 ,now I am completely cured from Sle Lupus disease. Doctor you are the best I have ever met, he is really great herbalist doctor, he has cure for another disease and infection with virus in the body, His herbal medication is 100% guaranteed without side effects in the body, visit his UA-cam channel ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html
I do not have Lupus I have severe anemia which causes very bad fatigue and I had a similar experience but the positive thing when I was feeling very fatigued at work one time to the point where I almost was going to just fall down one of my co-workers asked me what was wrong I told her nothing was really wrong I'm just feeling very very very tired AKA fatigue I was barely even able to talk much do to it and she responded with oh just be positive and it actually got me really annoyed I tried to explain to her that it's not something that feeling positive could fix I didn't know how else to explain it to her
I for one will be sharing this video. I know someone with Lupus so it's helped me understand a little more since i've not long found out about it. I have Fibromyalgia and is quite similar with pain and fatiuge aspects so we help each other out as we both have experiences of people lookig down at us because we may look well but feel horrid :-( After all, if we can't do that then what can we do? One day i'd like to see a cure for both Lupus and Fibro. Still a long way to go but maybe in my lifetime.
Thank you.. really thanks a lot for this vedio
My friends can't understand me so I was so sad and tired...
I'm not good at English so I don't how can I explain it but Thank you and I wish it will be better with other people who have Lupus
God bless all of the people who are suffering from it !
Very nice video. For me was perfect all of the descriptions because I have Lupus since 12 years old and I'm the only one in my family that knows how hard and difficult is to live with this symptoms for my whole life. And also how is hardest is to explain to friends how I feel. I suggest putting subtitles in multiple languages. I am Brazilian and I understand English, but my family and friends understand.
Mônica Souza Unfortunately it is very difficult for us to add subtitles for other languages because we a a small charity based in the United Kingdom and don't have the expertise on hand to do this for us. I'm glad that you enjoyed the video.
Thx! This helped me understand lupus a bit better as my mum has it :D
Great Job Lupus UK!
I am 14 and I was just diagnosed with Lupus and I am really scared and I hope you keep making videos because I really need them💕💕
+Crescent Wilson I am sorry to hear that you are scared following your diagnosis of lupus. We will continue making videos. We also have a wide range of information leaflets and booklets if you need more information. If you would like me to send you a pack in the post, please email me at paul@lupusuk.org.uk
+LUPUS UK I would love a pack that would be very helpful
+Crescent Wilson I was diagnosed when I was 8 years old. I am now 23 years old. I am dealing with a flare now and undergoing so much treatments that I thought I couldn't handle. I've wanted to give up so many times but just hang in there, you are more than Lupus. Don't let Lupus take your life, fight back and live your life even though I know sometimes it's hard. If you need any advice or someone to talk to, reach out to me in my channel. Message me on Facebook itsdeniseparel if you have questions about treatments and medicine, or if you need someone to talk to.
@Marian Cook omg are you serious, I’ve been dealing with this for 6 years.. I’ll email you right now
Thanks for this video, it was explained so well!!💜lupus
I can’t lift for shit, I’m always in pain and tired people just don’t understand my struggles cos I look fine
My mother has lupus, among other chronic illnesses, and it's awful seeing the affects of it and the medication on her body. She's a terrible, abusive person, but even she doesn't deserve to have to cope with it. My sister has been having a lot of body problems lately and we aren't sure if it's EDS, Lupus or rheumatoid arthritis because the symptoms are quite vague and they all run in the family. She's too scared to see a doctor because she doesn't want it to be real, which I hear can be quite common.
Hi Al,
I'm sorry to hear about your mother and sister both being unwell. It is understandable that your sister may not want to see the doctor if she is afraid of being given a diagnosis for a chronic illness. If it is something like lupus or rheumatoid arthritis it is better if it is diagnosed earlier because then it can be monitored and treated to prevent the accumulation of damage. Is there anyone who could go with her to the doctor for support?
I have all of this symptoms,but the doctors told me, that im tired because of my work,that i need to lower my cholesterol,this was my problem for years no one understand me even the doctors.😰.right now im suffering joint pains,mouth ulcers,hairloss,fatigue.. I dont know what to do.. My hair is thining.im scared.😢😢😢
I was playing State of Decay and one of the characters has Lupus. And I was like, I’ve never heard of this so I’ll search it up.
I recommend Dr.Auchi on UA-cam channel for saving my life from Sle Lupus disease 🦠, when I use the herbal remedies I get from Dr.Auchi. I was totally 💯 cured completely..ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html ,,,
I'm only 12 and I got lupus at the age of 9 it was rough
Stay strong everyone
loved the video, because it is cute and easy for people that have no idea what lupus is to understand our behaviour. I'm from lups Brasil and would love to make captions in portuguese to share this around here in a way people will understand. are you ok with that?
Hi Maria,
I'm glad you liked the video. Yes, of course, we would be very happy for you to produce the video with Portuguese captions. Perhaps you could share the link with us when you've done it? - Paul
LUPUS UK
Great! if you could send me the script, voice over, it would make my job easier, is there any email I can contact you? mine is marocamaia@gmail.com
Maria Luiza Maia I'll send you an email :) - Paul
I can relate to all of this
I recommend Dr.Auchi on UA-cam channel for saving my life from Sle Lupus disease 🦠, when I use the herbal remedies I get from Dr.Auchi. I was totally 💯 cured completely..ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html ,,,
Great video! Thank you
I have sickle cell disease and I have to deal with ppl not understanding how much pain I'm in.
I just got out of the hospital today (3/21/21 & I was admitted 3/15/21 so that was about a week. I had to be given 3 units of blood during this week.
♥️
Am crying because Selena Gomez is struggling with lupus....😫😫😫😫
My friend just died from lupus...
Hi Meaghan. I'm very sorry to hear about your loss. If you need anything, please get in touch and we will do our best to help.
I'm so sorry for your loss,Hugs😇
Meaghan Black prayers
Meaghan Black I sympathise greatly with you. I have Lupus my GP asked for urg appt 03/17 and a few times since. My bloods were haywire, she's been very concerned, she got in touch again as did I. Left message with Consultant Secretary, no response. GP contacts again, as did I to discover, there's a long waiting list. I am on to be seen urgently, but the young lady explained despite my being near the top of the list she felt it wouldn't be anytime soon as the very urgent list was full! Saw GP 2 weeks ago I said I'd rung, explained the above. Her jaw literally dropped. She was not even aware of 3 lists. She rang the hospital, soonest I can be seen is 19/6. I had written down a long list of problems. At the top I had written FEAR. The fear that I hadn't a hope in hell of being seen. The agony would continue, or end! If the appts office hadn't slipped up (I got a strong feeling she should not have told me about the very urgent list). My lungs are affected badly. I've never smoked, don't drink, eat healthily, vegetarian but do occasionally eat fish. To stop losing weight I resorted to eating rubbish, choc bars etc as they were easier to eat as I have no appetite and constant nausea etc. I don't eat processed food I find veg curry is good but for many months I've been forcing myself to eat. If I could go privately, which is not possible anyway, I know I could see the same Consultant within days at a distance of only 8 miles away! My GP is excellent but can only do so much. We cannot choose when we pass, but the largest part of my fear was because of this list, I could die, because he could possibly help resolve some problems give alternative medication and I could get past this crisis and feel even a bit better.
That is why I feel heartily sorry your friend died which of course has obviously effected you greatly. My thought was, was she a waiting list victim too! I try to hide how bad I feel from my sons and I hate going to my GP as she's very hard to get an appt with, because she is so caring and concerned. She is a wonderful girl. So again, I feel so much for you losing your friend. It's a really sneaky illness that leaves us in limbo!
Ty for this video 😭
I can't believe this is happening to me tbh. I have a positive ANA and DSDNA, raised CRP, ESR. I already had antiphospholipid aswell as pan hypo pituatrism and being registered blind. I'm on steroids already and hear that is one of the treatments. I'm seeing a rheumatologist to formally diagnose in 2 wks but feels like red tape... I was at a hotel last night. I woke up at 2 qm feeling like I was dying nausea stomach pain intense burning itching. My rash has gone purple... tests again a and e ... a chest xray... I'm not dying today, Satan. 🙏 but what next lord knows.
My life has literally fell to bits. I feel like I may aswell have cancer at this point. That can't be normal surely? Thank you God I am 40. I feel really sad for all the young sufferers out there.
I only just found out this is what's wrong in the last week and I'm really scared.
The hardest part so far about living with this is getting in to see the rheumatologist. Appointments are months out and I'm suffering. Just feel there is no help in site. :(
I'm sorry but us male lupies are so screwed. "Offer them a helping hand", "Help them carrying heavy things" yeah totally normal for a man to ask for help like that. How am I supposed to be the backbone of a family one day. How am I supposed to take care of my children and wife if I barely have the energy to take care of myself. This is not fair in the least and is giving me a lot of anxiety and issues regarding the way I perceive my very own masculinity. I got this gem of a disease from my lovely mother however she has been having no problem sending of my dad to do alll the chores and shopping and stuff like that. I can't do that and that is fucking making me mad
Hello. Thank you for sharing your experiences and thoughts about your diagnosis and how you think it will affect the way you are perceived.
It sounds as though you are putting an awful lot of pressure on yourself to be able to everything independently. I can appreciate your reluctance to reach out for help, but many people like to help others - it makes them feel good. I'm sure you've experienced this in the past when helping others?
Are your friends and family aware that you have lupus, or are you preferring not to share this with them?
Perhaps it would be helpful for you to chat about this with other men who have lupus? We have telephone contacts we can put you in touch with if you'd like? Feel free to email me at paul@lupusuk.org.uk
We also have an online forum with some male members at www.healthunlocked.com/lupusuk
We have a facesheet about lupus in men which may be of interest - www.lupusuk.org.uk/wp-content/uploads/2015/09/17.-Men.pdf
I recommend Dr.Auchi on UA-cam channel for saving my life from Sle Lupus disease 🦠, when I use the herbal remedies I get from Dr.Auchi. I was totally 💯 cured completely..ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html ,,,
i have lupus but light doesn't bother me? i've always loved the sun actually it makes me feel tired but in a relaxed way like a cat. What exactly does it feel like being in the sun for people with hypersensitivity to sun?
Hi Terra. Sunlight affects the majority of people with lupus, but not everybody. I'm glad that you do not experience sun-induced lupus symptoms but please be cautious because symptoms could develop in the future and the sun can be dangerous in other ways, such as causing heat stroke or skin cancer.
The symptoms that people with light sensitivity experience varies. About 60% will experience sun induced rashes, which may come on similar to sunburn. An additional 10-20% experience other symptoms such as headaches, fatigue and joint pain. You can read more about it in our blog at www.lupusuk.org.uk/coping-with-light-sensitivity/
sun exposure actually is one of the worst symptoms for me. I get terrible migraines after being in the sun , my eyes pain me I feel lightheaded and dizzy. basically I avoid the sun as much as I can. bright lights really also hurt my eyes and give me migraines which my doctor explains is all part of the photosensitivity from the lupus
Hi shivanna693. Sorry to hear that you have so much difficulty with light sensitivity. Our article 'Coping with Light Sensitivity' from our blog may be of interest to you if you haven't seen it yet - www.lupusuk.org.uk/coping-with-light-sensitivity/
You are so extremely lucky!! I can't even tan. After being out in the sun I throw up and or pass out. It is not much fun. Usually you feel very weak, or your limbs feel flimsy.
my mom has lupus and many other problems
Hi David. I'm sorry to hear that your mum is unwell. If she needs any information about lupus and the support that LUPUS UK can offer, we have a free pack which can be requested or downloaded at www.lupusuk.org.uk/request-information-pack/
LUPUS UK thank you alot
David T. Got bless her my friend keep praying and soon she will be healthy
If the comments are helpless. Say it. Don't try to make people read your mind.
Can't tay it anymore
Please guys does it cause tingling and burning sensation?
Lupus can potentially cause this, although it certainly isn't the only possible cause. It is worth discussing this (and any other symptoms) with your doctor to have it properly investigated.
I recommend Dr.Auchi on UA-cam channel for saving my life from Sle Lupus disease 🦠, when I use the herbal remedies I get from Dr.Auchi. I was totally 💯 cured completely..ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html ,,,
you have to choose how to use your spoons
Hi, I would like to know who did the animation? I am doing a degree project and I would need the author or study of the animation for my references. thank you very much!
Hello. The script and original storyboard for the video were produced by Paul Howard (who at the time was Projects Officer at LUPUS UK) in consultation with lupus patients. The animation itself was created by Dara King and A Sullivan Studio
- www.linkedin.com/company/a-sullivan-studio/.
hi! nice video
thanks for video , it made me to think again, should I tell about my lupus to my closest friends, does anyone told and after it regreted?
valda valionyte Perhaps you could ask members of our forum about their experiences of telling their friends and whether they found it helpful or regretted it? You can join for free at www.healthunlocked.com/lupusuk
thanks for advice !
ITS LUPUS!
-House
It’s never lupus
I recommend Dr.Auchi on UA-cam channel for saving my life from Sle Lupus disease 🦠, when I use the herbal remedies I get from Dr.Auchi. I was totally 💯 cured completely..ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html ,,,
Did House MD bring anybody else here?
Nope. My diagnosis brought me here
@@davidmcnamara737Testifying about Dr Okanigben on UA-cam is a great joy I have ever had in a while because , this man transformed my life in all ramification . Thanks doctor for putting an end to my Lupus sickness Keep saving lives doctor :ua-cam.com/channels/CATf7fAqc69ziA14vTUXGg.html
We checked i have the markers for lupus but not full blown lupus a few years ago. We havent rechecked yet. I might have lupus as i end up sleeping or taking a nap frequently.
I'm sorry to hear that you have trouble with being tired a lot. Do you have any other symptoms?
Joint pain but that is because of skeletal abnormalities
If you are struggling with symptoms then it is worth discussing it with your doctor and seeing whether further investigations should be done or a trial of treatment.
I'm 22 and just been diagnosed with it, I wonder how long it's been here actually, I felt like it took over my life, take medicine for depression, lupus and anemia.
+Amir McDaniel Many people may live with symptoms of lupus for quite a while prior to diagnosis. Since you are newly diagnosed, if you need more information about lupus you can request or download a free info pack from our website at www.lupusuk.org.uk/contact-us/
Thank you ❤
+Amir McDaniel I was diagnosed when I was 8 years old. I am now 23 years old. I am dealing with a flare now and undergoing so much treatments that I thought I couldn't handle. I've wanted to give up so many times but just hang in there, you are more than Lupus. Don't let Lupus take your life, fight back and live your life even though I know sometimes it's hard. If you need any advice or someone to talk to, reach out to me in my channel. Message me on Facebook itsdeniseparel if you have questions about treatments and medicine, or if you need someone to talk to.
itsDeniseParel awww thank you love, your comment touched me, I can't imagine. I made a promise myself I wouldn't let this illness define me. I will definitely keep in touch.
I have this and I cry everyday in summer
HI Kimberly,
People with lupus do often experience an increase in disease activity during the summer when the sun is out more. We have an article on our website with lots of information and advice for people who are light sensitive which may be of interest to you - www.lupusuk.org.uk/coping-with-light-sensitivity/
My mum has it i think i do too:(
I have lupus😭😭
I recommend Dr.Auchi on UA-cam channel for saving my life from Sle Lupus disease 🦠, when I use the herbal remedies I get from Dr.Auchi. I was totally 💯 cured completely..ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html ,,,
I am also sle patient .now i have kidney problem .kidney have leak protein 0
Hello. If you need more information about lupus and the kidneys, you can read our booklet at www.lupusuk.org.uk/wp-content/uploads/2015/10/Lupus-and-the-Kidneys.pdf
I recommend Dr.Auchi on UA-cam channel for saving my life from Sle Lupus disease 🦠, when I use the herbal remedies I get from Dr.Auchi. I was totally 💯 cured completely..ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html ,,,
im really not alone
Testifying about Dr Okanigben on UA-cam is a great joy I have ever had in a while because , this man transformed my life in all ramification . Thanks doctor for putting an end to my Lupus sickness Keep saving lives doctor :ua-cam.com/channels/CATf7fAqc69ziA14vTUXGg.html
I have lupus to and I am sad because I love sun
I recommend Dr.Auchi on UA-cam channel for saving my life from Sle Lupus disease 🦠, when I use the herbal remedies I get from Dr.Auchi. I was totally 💯 cured completely..ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html ,,,
Testifying about Dr Okanigben on UA-cam is a great joy I have ever had in a while because , this man transformed my life in all ramification . Thanks doctor for putting an end to my Lupus sickness Keep saving lives doctor :ua-cam.com/channels/CATf7fAqc69ziA14vTUXGg.html
I just got my results and my titer were high for lupus. I don’t show any symptoms but i have those antibodies ! Let me know what I should expect !
Hi Mariana. Do you know which antibodies you were positive for? If it was antinuclear antibodies (ANA), then it doesn't necessarily mean you have lupus. Around 5-10% of the population can have these antibodies and most will not develop an autoimmune condition.
If you have no symptoms, do you know why the blood test was done?
I recommend Dr.Auchi on UA-cam channel for saving my life from Sle Lupus disease 🦠, when I use the herbal remedies I get from Dr.Auchi. I was totally 💯 cured completely..ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html
Its never lupus.
video is good !
Lupus has entered India also..sadly doctors don't get whether im suffering from it or not..& its depressing there is no cure for it here in India :(
Hi Sonam, I'm sorry to hear that your doctors do not have a very good understanding of lupus. At present there is no cure of lupus anywhere. Are you currently receiving any treatment?
LUPUS UK I hv ANA-ve but a slight symptom like on scalp they saw it..gave a halox lotion dats it.. they say we will look if it increases...as they hv no idea so no medication though..
OK. If you need more information about skin involvement in lupus, we have a booklet that you can read and download at www.lupusuk.org.uk/wp-content/uploads/2015/10/Lupus-and-the-Skin.pdf
LUPUS UK thankuuu so much :) u ppl are doing great work in spreading awareness
I wonder if I have Lupus
Hi. Are you concerned about any symptoms in particular? Have you been to your doctor?
I feel strong currently due to diet and lifestyle changes ie exercise but in the past I can identify with symptoms from the age of about 20...
@@mysterymarierosetarot7894 I can't say that lupus is definitely not the cause of the symptoms you experienced, but most symptoms of lupus are not exclusive to the disease and can be seen in other conditions. I am glad that you are feeling strong after some changes to your diet and lifestyle.
I recommend Dr.Auchi on UA-cam channel for saving my life from Sle Lupus disease 🦠, when I use the herbal remedies I get from Dr.Auchi. I was totally 💯 cured completely..ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html ,,,
What do i to support a friend i only know online? :(
Hi Ammy,
Your friend is very lucky to have someone so supportive in their life. I imagine just being there to listen if they want to talk and trying to understand how they are affected by their lupus would be helpful. It will depend upon the individual, they may just want a distraction from time to time and to try and forget that anything is wrong. If they are keen on raising awareness of lupus online, you can help them by sharing their posts and showing support.
I have same difficulties :(
I'm 12 and just diagnosed the muscle aches annoy me the most and also the part I cannot go under the sun I used to be in competing running and softball but now I cannot play anymore:(
+Amanda Tan I was diagnosed when I was 8 years old. I am now 23 years old. I am dealing with a flare now and undergoing so much treatments that I thought I couldn't handle. I've wanted to give up so many times but just hang in there, you are more than Lupus. Don't let Lupus take your life, fight back and live your life even though I know sometimes it's hard. If you need any advice or someone to talk to, reach out to me in my channel. Message me on Facebook itsdeniseparel if you have questions about treatments and medicine, or if you need someone to talk to.
+itsDeniseParel hope you feel better soon:) btw I just found out the muscle ache were due to a blood clot
:( Are they treating for it? Hopefully the pain goes away soon. I'm here for you if you need to rant or have someone to listen to :)
+itsDeniseParel going to the doctors this Friday to find out what I have to do anyway thanks for ur concern
my mum has lupus, fibromyalgia and anemia. she also has go-bladder troubles. im scared :(
Hello. I'm sorry to hear that your mum is unwell. Is she currently on treatment for lupus?
she is on treatment thankfully
oh wow idk lupus is so much similar to mdd.
Testifying about Dr Okanigben on UA-cam is a great joy I have ever had in a while because , this man transformed my life in all ramification . Thanks doctor for putting an end to my Lupus sickness Keep saving lives doctor :ua-cam.com/channels/CATf7fAqc69ziA14vTUXGg.html
I'm 11 and I have lupus :(
Hi Mina. Have you had lupus for very long? Is your school helpful and understanding?
misato katsuragi has lupus