What was it like finally getting a diagnosis of Ehlers-Danlos syndrome (EDS)?
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- Опубліковано 16 вер 2024
- Tanya was diagnosed, only recently, at age 46. She explains what it was like finally getting a diagnosis of EDS. Reducing the time to a diagnosis is key for quality of life.
The Royal College of General Practitioners (RCGP) launched an Ehlers-Danlos syndromes (EDS) toolkit for GPs and healthcare professionals in 2018. The toolkit, created in partnership with EDS UK and funded by the charity, aims to improve the recognition, response to and management of EDS in primary care. Over 70,000 people have accessed the toolkit since its launch in May of 2018. rcgp.org.uk/eds #RaisingAwarenessTogether
🙏🏾 We're not crazy!!!
I was diagnosed with hEDS in August last year and this year in April 2023 I have really started to feel so much better mentally. I had received so much medical gaslighting and had lost hope but now I am feeling so much happier and less afraid of the pain I feel because I know what is going on. I also have cervical dystonia and was able to share this new diagnosis with my neurologists a few days ago. It means you can more readily advocate for yourself. Thank you so much for sharing this! Xxx
I'm so glad you have a diagnosis finally, it must be such a relief. I've recently been lead to think I may have this condition but I have decided to go private to speed things up. My gp has been excellent. I'm 56 and have almost reached the end of the road with trying to understand why I am like I am.
Could you explain what you have done to speed things up? Did you end up getting any answers?
I was happy at first because I had an answer to what was going on. I was already feeling the pain but now it had a name. Then I realized doctors didn’t understand me well at all.
My Daughter was diagnosed first and the about 2 years later I was diagnosed in October 2022 at age 48. It was a big relief for me to now know why I was going through all that I have since a child to. I had Mitral Valve replacement in 2018, thankfully to God I am still alive 🙏🏽
I know exactly what you mean. I hope you live happily and well x
I was diagnosed with EDS today and it is a relief to finally find out where all my complaints come from. I am 23 years old.
I was diagnosed today finally!!! 🎉 it’s not like I haven’t always had these symptoms or there’s a magic cure but it has a NAME
I was just diagnosed at 29! Along with ADHD and Autism. It's crazy how long doctors can dismiss you before it all falls into place
I have ADHD and autism, I also have all of the examples of Eds, just feel weird on how to bring it up with my doc and what he will say
It was so heartbreaking for me when I was diagnosed. It still is, maybe even more so because doctors dont understand us well at all.
I got diagnosed at 37 years and they believe I had it since I was born. It was a relief but by no means an answer for what I suffer with every day.
You absolutely were born with it, all of us zebra were.
I have eds and its the worst thing in the world STILL being told its all in my head
It took me 48 years old to get my diagnosis of EDS but once I got diagnosed it was like a “ Ah- ha” moment because I FINALLY got the answer as to why I kept having chronic pain and I had dislocated my shoulder at my work just by cleaning a table, of course lo and behold I had done it again but this time I was just cleaning a desk in a cubicle.
okay but honestly though, I was i think 26 or 27 when I started having major pain in my joints (more so my shoulder) and I went to so many doctors, until eventually one brought up the idea. after that it took until I was 29 to get a proper diagnosis to the one doctor who would actually see me with my insurance (I'm in the us and on state insurance).
One thing worse than pain is being unbelieved when You’re telling the truth.
We are all good at masking away pain, (I know that I did because of the experience of checking if I had an obstruction was done, by a male doctor manually) but this doesn’t do us favours. We tend to get put in a psychological basket when tests arrive back “normal” or even if they show strange hormonal problems like thyroid hormone irregularity it’s usually sub clinically associated and resolves if we take iodide or it just resolves. Thence no indicators from serum, urine, feacal samples they’ve been conditioned to think it’s all psychological. A simple spit test, is all that is required to determine if we have rare type Ehlers Danlos yet we are never offered that early on. Or even when the other tests result normal we’re happy that we don’t have parasites and don’t have ceiliac disease etc but they need to do connective tissue analysis before throwing us at psychologists.
Vindication!
Same! Same time frame also, I'm about to be 45 and just diagnosed 2 weeks ago
It was a relief at first for me too. Considering there doesn't really seem to be any way to treat mine. I have physical therapy and that's it. My pain management is PT. Now I'm just like, now what? I have markers for class and vascular eds, as well ass, a marker for marfans/MASS
Somehow it is nice to finally have a name for why everything is harder for you than others. To be able to explain that you have a connective tissue disorder and you aren't lazy or putting it on for attention. I hope doctors become more aware and will be helpful and not dismissive.🦓🖤🤍🖤
Nothing because they wont do any symptom management
Yeah its a relief but you still get no cure for that :c