My Journey To hEDS Diagnosis | Ten Years Undiagnosed...

[@robinhahnsopran]

hEDS Diagnostic Criteria: ehlers-danlos.com/wp-content/uploads/hEDS-Dx-Criteria-checklist-1.pdf

[@FacesByChelseaK]

My first rheumatologist said that hEDS needed to be diagnosed by a geneticist. My current rheumatologist, who I like overall, said that I “probably have something autoimmune going on,” but that since hEDS doesn’t have any “real treatment,” I don’t really need a diagnosis. I was already diagnosed with hyper mobility by the rheumatologist who diagnosed me with fibromyalgia years ago, so that doesn’t help the situation. (I already have that diagnosis, so why do I need an upgrade, so to speak?)

[@conniegarvie]

A decade is a very short period of time! I first had symptoms in my early childhood, but didn't get my diagnosis until 3 days after my 60th birthday!

[@conniegarvie]

My Rheumatologist said the same thing! "I don't know why you'd want this diagnosis. I can't cure it. It's not my specialty" (a Rheumy). I told him that a diagnosis would allow me an answer for my 45+ years of symptoms and that I would be able to access support groups, etc. Eventually he became tired of talking to me and said, well you certainly have many, many symptoms, maybe too many symptoms. It's probably in your head, but to get you off my back, I'll diagnose you. But don't come back here ever again! " As if there was any possibility I'd put myself in that situation again! He was a true ashore. Now they want me to be seen by his partner who believes Ehlers Danlos is a psychiatric diagnosis, similar to Munchausen Syndrome! That's a huge NO for me!

[@TequilaStandifer8888]

Wow what an ego trip he was on so all of your symptoms and a diagnosis is irrelevant because he can’t “cure” u smh I’m sorry you experienced this thank you for sharing I am waiting on an apt with a rheumatologist for a Heds diagnosis I have been dealing with this my whole life and it worsened with and after every pregnancy

[@Pinkyyyy13]

OMG 16:12 I literally had the same experience with a doctor when I brought up that I might have fibromyalgia. Even if there's no cure, a label can be SO helpful. I'm super happy for you that you were finally able to get a diagnosis 😊

[@saramain8752]

Love being a part of the dazzle! Thank you so much for sharing your story. I was told my whole life it was JUST anxiety and depression 🙃... even the black out spells in elementary school. I was FINALLY diagnosed at almost 25 years old after they found that my anxiety was really due to Pheochromocytoma.... another zebra story.... but from there I still needed to find knowledgeable doctors who would listen and help me.... still working on that but thanks to our amazing community I know what else I can try, like when I saw your ring splints and compression gloves! I had no clue! Thank you again, so so much!

[@robinhahnsopran]

Oh wow

[@dt5772]

Thank you for sharing. Also - this should be required watching for doctors, because, WOW 😳

[@robinhahnsopran]

[@StadinBasso]

Oh wow! That's quite a series of events. I'm so glad you finally got the help you need.

[@robinhahnsopran]

Thank you! I could only take being told that vegetarianism = anemia so many times before I HAD to look somewhere else for answers :D

[@katjaschmid-doyle4698]

I relate to the bone pain and limping so hard (when I was 10 my teacher commented on it). Also super bendy, pursuing a pots diagnosis/ have been referred to the POTS clinic (after collapsing at work) and GI doctor. Initially ascribed it to Lyme (tested positive and treated for that a year and a half ago). I turned away from the professional opera/ cabaret singer for Psych stuff

[@mauve3734]

You’ve been given me a lot of hope I see my rhuem next month , I’ve been diagnosed with gastroparesis and pots I’ve been on tpn and Now I’m tube feed, the person who brought up eds to me was my physical therapist I never thought it could apply to me until I actually looked into it

[@emmynoether9540]

Thumbs up from all Vegetarians, Vegans and Supporters. 💚🌱

[@robinhahnsopran]

💚💚💚💚 Thank you!

[@emmynoether9540]

@@robinhahnsopran I've been vegan for 2 years now and it's the best. I don't remember, have you mentioned when you started eating vegetarian and why?

[@charlottestandage2765]

I'm amazed at how similar all of our stories are. I had a very long diagnostic journey. The first rheumatoid I saw didn't even examine me and stated that I wasn't hypermobile. So I had to go private due to the long NHS waiting list and was then properly assessed and examined and I scored 7/9 for hypermobility. I also received an hEDS diagnosis on the same day. In fact my identical twin sister was diagnosed years before I was and the first rheumatologist I saw didn't believe me. So I am now making a formal complaint. I don't think it's lack of education as much as its a lack of empathy. Thank you for sharing your story. Xxx

[@keebyz5750]

I just went to my primary care doctor yesterday to talk about my joint pain and my suspicion that it is hEDS (i fit enough criteria to be diagnosed). This has been my doctor since I was born and I'm so glad she's listening. I get bloodwork done tomorrow and if nothing shows from there, I go to a rheumatologist

[@emmynoether9540]

I'm very sorry for the long road you had to take until your diagnosis. I can't comprehend this many years with your symptoms, you are very strong! I also had a difficult road in getting the right diagnosis, but it got along faster. One doctor gave me a wrong diagnosis and medication for a few weeks. That sped things up because it made everything so bad that I got hospitalised for a while. Thankfully they took the time and effort to get to the correct diagnosis and medication. I can manage now but my number of spoons per day is varied and limited. Online communities helped me a lot with accepting my body and mind as they are and finding joy in life. So thank you for starting your channel, we need channels like yours, who raise disability awareness and also discuss other fun stuff.

[@robinhahnsopran]

Thank you so much for sharing this, and for your support! I'm so glad you found support from the online chronic illness community 💖💖

[@florabraswell-nm1re]

Sometimes l think doctors are jealous because we already know what they should know!

[@Taiwankiddo2]

I loved listening to your story. You are hilarious. I am so sorry you had to do the back and forth so much. I got my GP to dx my hEDS for me fairly easily, it took a year to get tachycardia though, then he changed it to bradycardia without my knowledge, I'm now doing the back and forth for POTS and MCAD. My mild POTS has gotten so much worse since having Covid over a year ago. He is also making me do pulmonary lung tests instead of sending for POTS, so, I haven't been able to drive because of being dizzy. It's so much fun having so much going on and Drs not listening to us. I'm so glad you got help though. ☺️ Thank you for sharing your story.

[@crimeny]

The degree to which I want to SHAKE nearly all doctors both of us have ever seen has intensified substantially in the last 20 minutes and 45 seconds. Which is saying something, because... not a great track record. Thank goodness for supportive friends, informative internet, and your incredibly persistent self-advocacy. Also, like, there are TESTS for anemia. S i g h.

[@robinhahnsopran]

[@UnknownVir]

Growing pains actually unrelated to growing. One of my first things was I had my knees randomly dislocate as a kid. That went away around puberty but that's when I started getting faint and had my only full blackout from fainting (plenty of collapses with partial consciousness).

[@jasminesara8595]

This is so helpful! I've finally got a GP appointment with someone who is taking me seriously for likely hEDS. It ties together so many different signs and symptoms I've had my whole life. I feel quite emotional relating to all the barriers you faced to getting support. Thank you for sharing your story!

[@foklore_and_stories]

I am so glad I found your channel! This is encouraging me so much to keep trying to get my diagnosis.

[@DougKremer]

Greetings fellow hEDS zebra. Hugs and wave. This is all very familiar. It took me until age 46 to piece it all together. I had to do it myself also, I had no idea I was hypermobile until two years ago, guess I never payed attention to how other people moved. A physiotherapist brought it to my attention, so one day I added that to my google search with some of my other issues. The first click on the list was the Ehlers-Danlos Society hEDS page, halfway through the scrolling I felt like I was going to fall off my chair. Now both my 18 year old Daughter and I are diagnosed. Edit: love your ring splints.

[@robinhahnsopran]

Thank you so much! Yeah, the moment of discovery is so huge! So glad both you and your daughter got the diagnosis you deserve! :)

[@ReinaElizondo]

Hugs! Thank you for sharing your diagnosis journey.

[@robinhahnsopran]

Thank you for the support! I so appreciate it.

[@julius43461]

Beautiful channel and great storytelling. This channel looks like it should have 1m subs, not a few hundred. Best

[@katfoster845]

I'm pretty sure I have EDS, after going through many, many misdiagnoses. Including being told I'm anaemic because I've been vegetarian my whole life. I'm not anaemic, my iron levels are fantastic. I've also had doctors say it's "just fibromyalgia" or you have chronic fatigue syndrome. I think because they're the go to diagnosis when someone has chronic pain.

[@cosmicalchemist8219]

Makes sense you’re an opera singer, hyper mobility can make you be able to sing a lot more notes

[@dalaniekolakowski181]

I am in Los Angeles & soooo bet down from going to Dr’s & from feeling like crap😜 great video, very inspiring 💕

[@o.o4566]

My diagnosis took a long time because of me, my parents, and the medical system. My parents both have issues(dad has EDS confirmed by genetic testing after I got mine and mom has orthostatic hypotension and is prediabetic.) and have a long history of ignoring medical advice. They’re fundamentalist evangelical and most of my family is from various denominations and parts of that. They believe more in faith healing than doctors and both have strong ideas about willpower. Both are from the rural American south(dad alabama; mom is indigenous American from Florida) where access to medical care is limited. Travelling several hours for a family doctor isn’t unheard of. So with all the issues I had growing up with joints, skin, GI, eyes, heart, and pain they usually pushed me to pray and to get stronger by exercising and just push through. I got used to that idea that I was just weak.. I’d often say “I’m weak and my body is just stupid” or “my body hates me”. Well somewhere around the end of High School I started fainting and my hips popping out became a major issue. I sang and played marimba and several wood winds. I was in many ensambles from classical to jazz and WGI.. I was often taping my joints or having to leave stage from nearly fainting. At one point I had so many fingers taped up trying to continue playing four mallet marimba that gripping my sticks became impossible. So my second year of university I had to drop many instruments and focus on voice. Things in my body progressed and I had several bouts of shingles that were unexplained, unexplained allergic reactions, fainting, scars doing strange things, stitches ripping out, and eventually a rib became stuck out of place. This is when a doctor finally asked if I’d considered EDS. I went home and googled it and saw crazy skin stretching and thought “that’s not me I can only pull mine out an inch or so” and disregarded it. Plus there was an expectation in my family to maintain the status quo. So something so rare and unique could never be me because of course I’m nothing special. Eventually I was at the beach with friends and walking at an outdoor shopping centre. My hip was popping and began pinching inside. Eventually it got so bad that I was dragging my foot and failing to keep up with my friends. They convinced me to go to a walk in clinic. I didn’t have insurance at the time since I’d been working as a computer tech at Office Depot so that’s all I could afford. The walk in clinic said my joint was lose but out of their scope and sent me hope with neproxium sodium. I kind of gave up at that point. Fast forward to me moving out of the south and getting insurance again. I found a primary care doctor and I had all my records sent to her and explained how I’d been having all these symptoms for so long and recently hadn’t even been able to work because of them. She said that she really thought I had EDS and referred me to genetics at KU. The waitlist was two years but because of the heart complications I’d been having they put me on a waitlist. I was genetically tested and came up with a tnxb mutation that was flagged as pathogenic and rare(I’m the 28th person to be found with it) and not like the ones currently accepted as causing clEDS. So my parents were both tested and it was found to be from my father. They ran us both through the hEDS criteria as well and decided to for now lump us with hEDS since we both passed that. Since my diagnosis I’ve had an implanted heart monitor and a combination MAZE procedure and catheter ablation. I’ve also gotten into therapy and come to terms with being disabled and using medical aids. I walk with a cane and AFOs and am in the process of figuring out how to get ring splints. I have custom wrist and thump braces already from frequent dislocations in those. I’ve also been told I need a hip surgery but will need to travel for a specialist because of my tissue fragility and heart complications and I haven’t had the resources to do that yet.

[@robinhahnsopran]

Thank you so, so much for sharing your story. I'm so glad you're at least in a better place to get the care your deserve than you were before, though I hope you're able to get that hip surgery soon!

[@shannongreenwell1278]

My Neurologist is the one who diagnosed me with cEDS and it took me turning 48years old to find out that I had cEDS. Who knew that, I was born with cEDS? Yep, that’s it! My mom and other family members have Osteogenesis Imperfecta and that shares the same genetic mutation with cEDS!

[@nicmiskin8506]

Oof! What a journey. The difficulty in reaching diagnosis for conditions like yours is all too common and that is something our medical system needs to improve on a systemic level.

[@robinhahnsopran]

Hard agree.

[@ineedmorehobbies4853]

As a queer, disabled, classical singer, I sorta feel home. I also love cats (I have 2) and tea. I actually have suspected HEDS (I’m yet to be diagnosed so I don’t want to claim anything)

[@jiwankarki7188]

I have mild symptoms og heds i already lose hope for diagnosis I already visited morethan 15 doctors

[@UnknownVir]

Can you post a link to the criteria either in a pinned comment or in the description for easier accessibility?

[@robinhahnsopran]

Good idea! Have just done so in a pinned comment. Thank you so much!

[@rita.sotero]

hey where did you bought your finger braces? and how to deal with doctor dismissal (yesterday my family doctor (like a gp) said i cannot have it because i am not tall and skinny (i am pretty normal height and normal to light weight)

[@abcwildlife6423]

such a beautiful channel you have here. l love all aspects of your channel,and am happy to subscribe here.l,m evo form Australia✌😀❤💓

[@robinhahnsopran]

Welcome! 💓💓

[@gppoem3344]

Doctors gaslighting patients, there’s a surprise! My doctor told me I had tight hip muscles several times to explain my hip pain that I’ve had for years now. Total BS. I went to a few different doctors and found out I have hip labrum tears in both hips and that I have hip dysplasia and never knew it. This new hip doctor actually agreed with me about having EDS. Now I need to wait until October 2024 to get genetic testing. Let me tell you, I really don’t like doctors now.

[@irtap404]

❤

[@robinhahnsopran]

💖💖

[@UnDead483]

Wow... That was a journey... Yikes.

[@robinhahnsopran]

Yikes was how I felt for a lot of it! :P

[@florabraswell-nm1re]

Why do doctors have such a hard time diagnosing a patient? ❤

[@kagitsune]

🦓🦓🦓🦓🦓💖💖

[@robinhahnsopran]

💖💖💖💖💖💖

[@mariacallos0830]

Hello Ms. Gorgeous ;)