Rare Disorder

Join the Conversation on
Rare Disorder
761 people
0 stories
110 posts
Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
Don’t miss what’s new on The Mighty. We have over 20 email newsletters to choose from, from mental health to chronic illness.
Browse and Subscribe
What's New in Rare Disorder
Community Voices


2 people are talking about this
Community Voices

Covid-19 & Rare Disease Survey – how are you feeling?

<p><a href="https://themighty.com/topic/corona-virus-covid-19/?label=Covid-19" class="tm-embed-link  tm-autolink health-map" data-id="5e678dcff3e6f44cb2d93fd4" data-name="Covid-19" title="Covid-19" target="_blank">Covid-19</a> & <a href="https://themighty.com/topic/rare-disease/?label=Rare Disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="Rare Disease" title="Rare Disease" target="_blank">Rare Disease</a> Survey – how are you feeling?</p>
3 people are talking about this
Community Voices

Just a reminder

<p>Just a reminder</p>
3 people are talking about this
Community Voices

hEDS Diagnosis

Hi everyone. Last week I received an official diagnosis for hEDS (and a few weeks before that I was diagnosed with dysautonomia, but I have to see a cardiologist and get a tilt table test to confirm that it's POTS).

I am 18, and I have been experiencing symptoms of hEDS for the past 5 years just thinking it was normal. I am constantly in pain, either in my joints, muscles, or sometimes in my bones. My joints crack all the time, and often it is painful. I am not sure if these painful crackings are always subluxations, but I am certain that my hips subluxate daily. A few weeks ago my hip came out of place and I couldn't get it back in for 3 hours. It hurt so bad I couldn't walk. I am really struggling to process this diagnosis. On the one hand, it is a relief to put a name to all these symptoms and to know that I am not crazy. On the other hand, being diagnosed means that this isn't something I am going to grow out of. I will always be like this. And that sucks. I feel very isolated and don't know who to talk to about this. My partner has been very supportive but I don't want to stress him out with all of my worries, and I really would like to talk to other people with EDS.

Ironically, I have been involved in the rare disease community for pretty much my entire life, because my dad has a rare autoimmune skin disease called pemphigoid. For the past 4 years, I have been going to an event called Rare Disease Week on Capitol Hill to advocate for federal legislation that will help rare disease patients. The first year I went there, I met a woman with EDS, and she told me about all of the symptoms and how it gets diagnosed. Right there, she performed the Beighton test for me, and I scored a 9/9. She said that was very strange, and this was right around the time when I first started experiencing chronic pain and joint cracking. I thought to myself in that moment, "Wouldn't it be crazy if I had this condition?" But I didn't tell anyone about it. And as the years went on and my symptoms got worse, I kept going to Rare Disease Week and meeting people with EDS. I would show them how my joints popped and moved, and they would say "You should see a doctor, you might have EDS." But I kept it to myself because I didn't think it was possible for me to have a rare disease when my dad already had one.

Even now that I have a diagnosis, I feel like I am making it up, like I just wanted to be part of the community so I invented this pain for myself. But I know that isn't true. I hurt so much every day. I know my joints subluxate (my hip is out of place as I am writing this). I know my skin is soft and fragile and scars easily, and I am completely hypermobile.

I guess I am in need of some support. I don't know what to do.

#EhlersDanlosSyndrome #edsupport #HypermobileEDS #HypermobileEhlers-DanlosSyndrome(hEDS) #HypermobileTypeEDS #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #RareDisease #RareDisorder

14 people are talking about this
Community Voices

1 rib down, 1 to go

<p>1 rib down, 1 to go</p>
4 people are talking about this
Community Voices

Little “wins” for the week

<p>Little “wins” for the week</p>
4 people are talking about this
Community Voices
Community Voices
Community Voices


<p>BINGO TIME!!!</p>
1 person is talking about this
Community Voices

Tell me something good! #DistractMe

<p>Tell me something good! <a class="tm-topic-link mighty-topic" title="Distract Me" href="/topic/distractme/" data-id="5cabee5faf2da400d4e56a41" data-name="Distract Me" aria-label="hashtag Distract Me">#DistractMe</a> </p>
12 people are talking about this