Reacting to the Ehlers Danlos Episode of Casualty
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- Опубліковано 9 лис 2024
- We are all feeling the loss of Amy Lee Fisher and my heart goes out to everyone. She was such a light in this community and she will be missed dearly. This video is for you, Amy.
Izzy Kornblau gave me the inspiration for this video so go check out her channel!
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It’s really good to see you. The community is hurting right now and to see your smiling face is lovely. Sending my love to everyone
Got emotional seeing this character feel so validated when I first saw this episode. Took me ten years for people to stop telling me it was either a) anemia or b) depression.
I was always placed in the anxiety and depression category. Was told my POTS was "anxiety induced seizures" after epilepsy testing came back negative. 🙄
@@ZebraJenn Urgh! :( So sorry that happened to you! The number of things some doctors will blame symptoms on before they say "I don't know" is just... it's too much. :(
@@ZebraJenn I went through the same thing with my hEDS as well. POTS mimics anxiety, since both conditions are associated with increased activity of the sympathetic nervous system ("fight or flight" response).
Have they tried you on a nightly dose of Guanfacine or Clonidine yet? Those both calm the sympathetic nervous system by reducing the amount of norepinephrine and adrenaline in circulation.
Seeing this means so much to me, that you felt validated. Wow. I wrote this storyline, and was so limited to time etc it was difficult to get across what I wanted. But if it helped just one person in any way or like in your way - feeling validated, then my job was done. :)
Thank you for talking about Amy Lee Fisher ❤️ I have Vascular EDS and when I heard about losing Amy I haven’t been able to eat or sleep and I cry all the time. She had so much she was looking forward too, especially her new house and decorating it and being with the love of her life, Tom. I can’t deal with this.
I want to say I am so sorry you have to go through having EDS. Please take care, it was nice to meet you. 💫✨🦋
I wrote this episode of Casualty. I just came across this video randomly, and just wanted to say thank you for making it.
I wrote Niamh's storyline. I was very limited with time and script, but I did my best to share an experience similar to mine. I wanted to show the frustration in not being listened to the pain qe are used to dealing with etc. And it's so good to see feedback that the messages I wanted to come across, did ao effectively.
Am I allowed to be proud lol
For me, telling people an actual diagnosis was A LOT better than saying for 6 years "they have no idea."
Oh look, it's me! :) I'm glad you liked the episode, it was fun to work on.
Unlike my character I still don't have a proper diagnosis but thankfully I do have understanding GPs who listen and help with the pain. My HMS/hEDS is pretty mild all things considered, but the years of my life before I was in the show were the most unwell I've ever been because the toll of being in Uni every day was so intense and having GPs and rheumatologists then who didn't listen to me and left me with so much uncertainty and constantly doubting myself was horrible.
Loved this! In the UK it is actually called Postural Tachycardia Syndrome - they drop the ‘orthostatic’ hence why she doesn’t say it! Still called ‘PoTS’ though
I”m so sorry to hear about Amy. She was so sweet andI watched her for years. My sympathies to out to her family, Tom and everyone that knew her.
I know I am still grieving over Amy she was such an inspiration to all of us with EDS mine is hypermobility type with gastroparesis. Looked forward to her videos I was excited she uploaded the last video and find out she had died was so upsetting I feel for Tom and her family. Much love ❤️❤️
Went to the ER with my EDS diagnosis because I thought I might have dislocated my shoulder because I was in so much pain. I only subluxed but I’m still in a lot of pain daily and I get gaslit by doctors so often that my pain isn’t that bad and that I should see a therapist. I wish every patient would be taken seriously and that their symptoms are as well. Always remember you and your pain are valid.
We really would live in the hospital if we had to have help every time something slips out of place.
Yes! My ex said if I was really dislocating then I would go to the ER and i for one broke up with him and said i would legit live in hospital and my parents would be in so much medical debt it’s not even funny
@@sunflowercatie good for you we don't need people who minimalize our struggles 🙄 he's not worth the time
When I saw her dislocating her shoulder I just realized I've been doing tht sometimes on purpose cause I just viewed it as just another cool party trick to creep my friends out. Now I'm a bit scared 😨
So true! One of the first things I had to learn to take care of myself was the sub/dislocations, because I'm alone half the time it happens.
That very moment brought me to tears. So true, to be believed and supported.
It helps to listen to people who go through the same thing. Thank u for sharing your experiences with doctors.
Thank you for talking about Amy. This is my first time here. You are a very well spoken young lady. Need to go back and check out your earlier videos to get to know your whole story. Much respect to you 💪
Your face is so beautiful so is your soul.
I was devastated over Amy passing.. I hope she is in a better place 🙏🏼
thank you Mickey your an amazing person . ❤❤❤ would like to see more videos from you when you have the time . you ha e always been a staple in the eds community .
When Mickey corrected the doctor on the name for POTS and then winked I laughed so hard 😹😹
This may be completely off topic but I'm loving your longer hair!
Prayers for Amy and her friend and family.
So Sorry for your loss guys 🙏🙏🙏🙏
To be fair on the show, my joints go back in that easy sometimes, usually when they see it popped out while there for something else, like a bad fall, possible ankle break, etc. Which is just what happened here.
You did a great job, Mickey! Casualty is made in Cardiff, where I was born, and reflects an idealised but pretty accurate view of the NHS. It’s sister programme, Ho,by City recently did a story up on the cardiac ward about what could turn out to be vascular EDS (the story’s ongoing). xxxxxxxxxxxxxxxxxx
Casualty is a British TV show
Also hearing all this info on eds is fascinating, helps educate people
I was devastated at the loss of Amy she was a brave, beautiful, warrior feel so bad for Tom, her family & friends. Still seems like yesterday we lost Jaquie too 😢💚Thank you for your tribute video 🙏🏼💚 Mickey xx ps. I know the popping subluxations and the odd dislocation in makes my carers freak out lol, my last hospital stay Dec-Jan just gone my right hip dislocated in the wet room and I had to put it back in, the nurse I was with was kind of freaking out lol, EDS is hard on your body my late father had EDS too X
To Amy’s family I am so sorry for your loss my heart goes out to you all
I send my condolences to tom and Amy's family
I’m pleased to see how well you’re looking. Casualty has been on British television for a long time since about 1986. It’s very popular and they do have medical advisors to make sure they get things right. I liked the way you did this video. It was very interesting.
I am so sad about Amy. I really feel for Tom and her family and friends. I have watched her for years and also feel I’ve lost a friend.
So sorry to hear about Amy. I hope that you and Amy's parents are coping. I am sitting in my wheelchair eating a pot noodle and crying the same time X
I cried 😢....I'm going to miss Amy so much.
Oh my god. I have watched her for so long. I didn't see anything About her passing ... I even said to myself a month or so ago I wonder how she's been doing. Wow.. this is terrible. She was a bright woman
Hii I found your channel after watching Amy for so long! I like your videos!!
Rest in Peace Amy
It really hit me I really will miss Amy
When I was going through my dx Jackie, Amy and you were the ones I found. Amy was so helpful and kind to me when dealing with all of this. It's so heartbreaking and scary. I've had my dx for a year now...i just can't believe she's gone. Our support groups were so sad by all of this news.
Edit: even with a dx the treatment is still crap. I can't tell you how many doctors still question my dx after seeing the geneticist is really frustrating. Or want me to perform party tricks. Esp with everything this disorder can bring. No one is getting to the bottom of my vomiting which is going to kill me. Someone in my town recently died because of this while the hospital was trying to discharge her and she begged them not to. This is my biggest fear
Sorry you're going through that. I had decades of bad issues like this with doctors because of my hEDS. I had to fire so many bad doctors.
Have they tried you on Mestinon to see if it helps your digestive and dysautonomia issues?
Really, heartbreaking to read your comment. I am so sorry to hear this. Sending you love and prayers. Stay strong dear❤️❤️❤️
What support groups are you using? I haven’t been able to find an EDS group that isn’t toxic as hell, and I really wish I could
@@bayleighc.5843 The Ehlers Danlos Society has online EDS support groups. You can find those through their website.
Sorry you've run into toxicity in support groups - it takes a unique skill set for support group moderators to have in order to minimize toxicity. If they don't have it, those bad vibes tend to fester. Are the majority of people in those groups people who were diagnosed late in life, and have a lot of horror stories and trauma associated with the healthcare system?
@@Dulcimerist pretty much. I joined several Facebook groups when I got my diagnosis, because I didn’t know where to go from there, but it turned into people bitching about how undiagnosed people were joining (because it was all but confirmed, and they wanted advice and support, not toxic 40 year old women who act like children). I’ve been scared to join anything else since then.
I'm adopted so at the time I had no family history, but I got to meet my biological mom. At first she and the rest of my family didn't think they had it too, but I saw the signs, and slowly they've come around to notice that they've had a lot of symptoms. They've been starting to look for a geneticist.
I was super shocked to hear about Amy.
Oh no! Thank you for sharing this sad news. I had no idea.
They keep saying EDS isn't deadly but I've had friends and youtubers die quiet a bit that aren't the vascular type :(
My sister ripped the aorta of her heart gone in seconds. I ruptured my uterus in child birth. Type V or vascular is a white knuckle ride.
@@Dejibo My mother had an issue with her placenta where she nearly bled to death with me. The cord also got stuck around my neck. My brother says he has heart problems. I am being evaluated for hEDS and haven’t spoken to them in years but maybe I should tell them to get tested
@@SobrietyandSolace are you OK
@@meahdahlgren6537 I’m in a neck brace after being shaken by our dog. My GP won’t authorise upright MRI for CCI even though I was referred for it by rheumatologist last June. I still don’t have a diagnosis but for the criteria. My
support worker said I’m too much and is now supporting my carer who said the same. I haven’t left the house except for appointments for 3 years. I feel like I can’t rely on anybody and like a burden for existing
@@meahdahlgren6537 Thank you for caring hope you are doing better than me
You did an awesome job editing that together! Great reaction video, too.
It was because of Amy's videos that I finally was able to piece together my 52 years of horrible medical trauma and gaslighting by doctors and get diagnosed with EDS. I was so sad when I found out that she had passed away. It does seem that docs in the UK are a bit more informed and compassionate about EDS than docs in the USA...I am still trying to get proper care for all the issues that I have going on.
yoooo i didn't know you were friends with Izzy Kornblau! Your both legit my two favorite youtube ers. Please do a collab!!
I was crushed when Amy died, she was one of my favs
Wow your hair is stunning it's really long now!!
Wow, I didn’t know she had died. Amy and Jaquie were both a big part of me figuring out I had EDS. I can’t believe she’s gone.
Them saying the one in a million thing on grey’s anatomy made me laugh because they have another patient in another season who also has EDS (it’s a pregnant mom in that episode)
What season and episode please
I commented on her channel but it was so sad that she passed away I don't have any health issues like that but I had a few friends who did it Amy was amazing I found yours and her channel around the same time my sympathies go out her family and friends
I said for Amy big hugs to her family and friends
Thanks for the video! Have you seen the EDS patient in season 1 episode 12 of the TV show Transplant?
This was great!! Thanks!!
Also with the POTS they didn't measure her heart rate with the poor man's tilt! They focused more on her blood pressure.
There’s an episode of the Good Doctor with EDS too
Aww sorry for your loss I watching her UA-cam videos
My gastroparesis gets worse and better here and there and I’ve been to the emergency a few times due to how bad it’s gotten and they ALWAYS mention a freaking therapist and I’m like??? Do y’all not understand that I want to freaking eat I just can’t!?
Ask them how a therapist can fix the genetic mutation that affects all of the collagen in your body. The ER is one of the worst places to go for those of us who have EDS.
Have they tried you on Mestinon to treat your gastroparesis? It's an older medication, but a newer treatment option for gastroparesis. It also treats POTS and exercise intolerance. It's gaining popularity in treating EDS, since it can treat multiple issues with a single medication.
I obviously don't know who told you to see a therapist, or why they did that. Speaking as a therapist however, I would like to talk to someone like you. This would not be because I thought I could fix your problems, or because I thought you were mentally ill. This would be because of the stress and frustrations, the pain and anxiety that I am sure you experience. Sometimes it is just good to talk to someone, especially someone who is not a friend or family member. Sometimes when it is someone close to you, you can feel like you don't want to burden them with your problems, or add to their stress. When you see a therapist, it can be possible to feel free to vent and say what you are really feeling. It can allow you to express yourself freely and in turn this can improve your sense of well being. I think you should view it as another tool to help you deal with your situation, just like you might see a physical therapist or a physician. It should not be an alternative to dealing with your physical problems. Best wishes.
Actually, there's a simple solution to this problem, atleast in England and Ireland. Just train your physicians to ask anyone presenting with what they suspect might be an eating disorder whether or not they have any problems with joint dislocations or low blood pressure and dizziness. Think about it, if you have a room full of people who you think might have an eating disorder it would be easy to differentiate out the ones with eds with a simple questionnaire.
I actually had an eating disorder when I was a teen but am getting evaluated for hEDS now.
I hate being talked to this way by a medical professional. It took me forever to get an autoimmune diagnosis
Will you do a video with your mom about how eds affects her since its not as "severe" as your case? Please:)
I don’t think her mom has EDS.
@@allisond.46 I'm pretty sure that she's said in a past video (over a year ago) that her mom also has eds but that it doesn't affect her nearly as much. It's possible I'm incorrect though.
@@catherinerose5061 I thought she said her DAD had EDS, but okay.
@@allisond.46 that could be true. Maybe she will see this and tell us lol
Haven't seen anything from you in a while. I hope you are okay. Praying for you.
Hi 😃 I watch your videos from Saltillo Coahuila, Mexico I think you're a very beautiful and inspiring person. Everything about you is so beautiful.
I am sick of doctors who keeps saying “it s probably anxiety”. Thank you your and others’ video. I am seeing Dr Afrin in June for MCAS evaluation. I do not think I have EDS. I cannot eat much this past month due to worsening symptoms so I am seeing GI who knows about Mast Cell as well. Your video is helpful.
The one that normally dislocate don’t hurt or even make noise anymore. My right shoulder and left hip are constant. Ones that I’m not used popping out those just about kill me 🥺 I’m just lucky hubs is an EMT/FF so he’s good at putting back what I can’t. I feel like Sally almost lol 😂 but I was treated this way (including by the hospital I worked at) and then finally when I met my specialist he saved me. Yeah he’s a state away but at least he believed me. He also got me on infusions and pain relief and my life has done a 180° 😭🙏🏻 Trifecta and Gastroparesis and throw that in with the narcolepsy (T1).
I told a dr that one of my hips has dislocated a few times in my life and I just put it back in myself. He scoffed and said IF it had been dislocated, I would be screaming and he would have to put it back in. 🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄🙄
P.s. I also disagree w your idea that all EDSers experience dislocations as painful. I'd say some do, some don't. For me, they are rare and just feel uncomfortable. Additionally I have a lot of subluxations that I don't even notice. Sometimes I will have pain later from a subluxation.
Asking to weigh a patient is reasonable but there is no reason to say in front of the patient 'can we get a BMI?' the doctor could easily have said, 'please can we get an up to date weight to calculate your stronger pain relief?' then she could refuse to be weighed and refuse that muscle relaxant/pain relief.
In the UK because of the NHS we don't do genetic testing for any conditions that don't have active treatments and aren't shortening. Privately we only genetic test for common illnesses, cardiac health, cancers and main organ diseases with well established familial links.
Rest In Peace amy it’s sad to hear abt it and occasionally my joints dislocate and it’s sore tbh
I am diagnosed with EDS just recently. I'm still waiting on the comformitory tests. However, I have always been a very active person, but now I'm starting to deteriorate. Expecially my hips shoulders and ankles. And it really worries me because I know I'll probably need aids soon and it scares me that I won't be able to do the things I've always been able to do.
I live in a community when many people go to the ER for pain meds...I have one doctor there that knows EDS because her daughter has it...even with a diagnosis and mentioning it to the physicians they look at me and say if you are not in that much pain then nothing is wrong or you’ve been here so much your just looking for pain meds. I respond to them... “look at my chart and see how many pain meds I’ve ever taken from the ER...once and they did nothing for my horrific pain...no thank you” then I kind of chuckle when they come back apologizing and I tell them I just want to know what is wrong! It is nice though when medical people are educated in EDS and POTS.
I cried when I watched Amy's video, (I also followed I'm not going to be able to spell her name right jacquie) I'll pray for everyone, and I love your stuff and grey's anatomy too lol and I see your no sleep club member too.
I was 39 before I was diagnosed, it was definitely an ah ha moment.
That was about the age that I was diagnosed as well, although a doctor suspected it when I was 21. Unfortunately, I was referred to a rheumatologist who was clueless about it and just wrote it off.
7:36 OMG this. I've been underweight my whole life, and doctors have been telling me to eat more my whole life.
It's so frustrating watching this and hearing you talk about it, it really does happen so often. I went to the geneticist to check for EDS because my rheumetologist diagnosed me with joint hypermobility. Though the rheumetologist explained that the treatment wouldn't change with an EDS diagnosis because of poor family health (heart failure/diabetes t1/vascular issues) I wanted to check for EDS because I was afraid I had the vascular type of EDS. Despite scoring 7/9 on the Beighton Scale in his office, the geneticist refused to test me because "EDS is a flavor of the month diagnosis" and I didn't have in depth family history details on one side of my family. I am beyond frustrated.
Get a second opinion. That geneticist was lazy and ignorant! Your primary care physician could order the vEDS genetic blood test, as it would help to guide your overall plan of care. You have a hEDS diagnosis for now, correct?
@@Dulcimerist Just Joint Hypermobility, not attached to any EDS diagnosis. The way our insurance works is the specialties are micromanaged so your PCP can only do internal medicine stuff, they need to refer to geneticist or rhemetology for other specialties. My PCP doesn't even do my steroid shots for my knees, that's another dept altogether. Sadly you can't "Choose" which Geneticist you get, but I will try again...
Bones has an episode where a victim had EDS
I think if you are underweight, you don't have much muscle mass to stabilize your joints and therefore hypermobile joints are more visible. I don't have EDS but I am just thinking here.
You look stunning! I was left wondering that is it more difficult or are you in a bettet shape to manage and take care of your hair now when it's longer? I remember that you wanted to have a shorter hair because it's easier to manage.
Loving the look...natural but chic
I don’t have Eds but I have recently been diagnosed with irritable bowel syndrome I know that pain of not being taken seriously because someone I know that has stomach problems but finally I was taken seriously and I am recovering but I am still suffering the pain
Thanks so much for doing this. Hey I have cEDS too! Do your organs drop too? Mine all sit lower than normal
I loved this video!
Right now praying and hoping for the Pots and the EDS foundation to be started.
Died April 1st. Definitely heart breaking.
Oh the shoulder trick! I can usually use it to reach a few inches further if i really need it 😆 made my boss's mom wretch one day that she saw me do it. Its a bug and a feature!
Checking on you. Haven't seen a video from you in a while and wondering if you're okay.
I was wondering the same thing 🥺
Amy's videos were one of the reasons my oldest daughter and I went and got tested for HEDs. We would never have known if it wasn't for her videos. We both cried when we heard of her passing. She was a bright light in the HEDs community and I'll miss seeing her videos and updates. My heart goes out to her family and friends.
Love the Colleen Ballinger merch!
I love your videos
Classical eds here as well COL5A2
♥️
One thing I'd like to point out: they took her BP and heart rate while she was laying down and were like "POTS?????" instead of letting her normalize, then getting her to stand back up, and try it one or two times, before throwing the possible diagnosis out there....like there are a lot of things that could cause low BP lol.
💕💕💕
And I think the Resident as well
Getting diagnosed would no way be that easy 😫
What’s the episode and season of this
Who the hell was the one dislike? Like why 😂
Anyway. I related to that women on the show so much. Dealing with doctors telling you nothing is wrong is so hard when you yourself know something is wrong. Even after I’ve been diagnosed I’m still dealing with doctors not listening 🙄
how are you, miss you and maisey
I’m sad
I don't have EDS but I do have a disability, this review and your comments on how EDS affects you is very interesting.
As someone from the UK where casualty was filmed for so many years (from 1986 when it began) but it was moved another part of the UK since 2012
Thank you Mickey brilliant explanations
Finally thank you for your comments about Amy, who I followed for years. She a wonderful kind person
🌸🌸🌸🌸💐💐 beautiful
The Autism representation in movies and series is flakey, and makes most in the community cringe most of the times, too. Since both EDS and Autism are spectrum disorders, it is hard for the filmmakers to cram every symptom in without making the character unbelievable.
Living with rare disorders sure is an adventure. I am not only on the Autism spectrum, but am also a neuroendocrine tumour (another one in the rare/uncommon category) survivor, and have a rare muscle disease, which can not have a name yet, because the geneticist is having a field day investigating my material, had a freak brainbleed of unknown origin, too. As a side, they found EDS related mutations where they are not sure, if they have pathologic relevance. Vascular is ruled out.
My ER visits also often result in shrugging of shoulders and doctors apologizing, that they did not find, what is wrong, but since I am stabilized, they send me home.
Swelling of lips and eyes, circulatory problems, numb limbs, pain in muscles, joints, head, vision fluctuating between blurry and doublevision, suddenly going limp and not being able to move, you name it, it probably had me visit several doctors at one time or another.
I wish, we had a name for it all and maybe even a treatment.
We autistic folks are overrepresented among EDS-ers... like autism, POTS, EDS, MCAS are a super common combination.
Are u still on feeding tube until now?
We are missing for all of our losses. This is what Make-A-Wish we stand for. We salute for the fallen in EDS. The song for Amy: Auld Lang Syne. ❤️💛💔🙏🏻🙏🏻🕊🕊
Hey life with stripes have you ever met someone with arthritis?
Did you know Arthritis can attack internal organs and eyes and even blood vessels?
Did you know babies and children get Arthritis? Babies can be diagnosed as early as six months old. I am kind of curious, do any of your disabilities effect your reproductive organs at all? I hope you do not mind me asking.
Took 16 years to get diagnosis
It was actually a hip specialist who figured it out with my SI joints dislocating every step I take. He thought Marfan's, but after the bloodwork, the cardiologist didn't know what it was, but definitely connective tissue. I did my own research on what the genetic testing showed and found out about EDS Classical type. I was symptomatic since a small child, but it was never connected to EDS. I had to do my own research to find out what to do about it.
😧😢