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    Community Voices

    How do I know if I have reached the point of needing a wheelchair?

    <p>How do I know if I have reached the point of needing a wheelchair?</p>
    9 people are talking about this
    Community Voices

    How long/hard was your social security (SSI) application process?

    <p>How long/hard was your social security (SSI) application process?</p>
    11 people are talking about this
    Community Voices
    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

    How did you sleep?

    "As an occupational therapist with hypermobile Ehlers-Danlos syndrome (hEDS), “painsomnia” (pain-induced insomnia) is something I come across a lot. I work with a lot of people who have pain and I also live with it. In fact, I had no idea chronic pain wasn’t normal until I was 19. I genuinely thought everyone was in pain all the time. Pain is my “normal” so it must be the same for everyone right? Seems not." Inside the Mind of Someone With Hypermobile EDS at Night
    #HypermobileEDS #HEDS #EhlersDanlos #hypermobilityspectrumdisorder

    7 people are talking about this
    Community Voices

    Can you relate, Bendy Bunch crew? 😂🦓

    <p>Can you relate, Bendy Bunch crew? 😂🦓</p>
    9 people are talking about this
    Community Voices

    ISO: suggestions on working from home w/disabilities

    I suffered through a tilt table test last week, which confirmed my #POTS diagnosis, as well as added a #NMH diagnosis. The next day I received an email from my Geneticist confirming my official diagnosis of #HypermobileEDS. All of which I suspected, just had to get the official answers. My issues tend to flair exponentially in the summer and the winter... anyone have any advice on how to go about establishing a #workfromhome job? Because as it gets colder and colder it just keeps getting harder and harder for me to get out of bed in the morning. And in the summer the heat just turns me into a puddle, melted on the ground.

    2 people are talking about this
    Community Voices

    When (and how) do you tell someone you are newly dating about your chronic health condition?? #Relationships

    I have Hypermobile Ehlers Danlos Syndrome, alongside a few co-morbidities such as Chronic Fatigue, Chronic Migraines, mild POTS and IBS. I have met someone recently and things are going well, but it’s very early. I’m going to have to tell him at some point soon-ish because I sleep a lot and need to make daily adjustments to keep myself on an even keel. How long do I leave it before telling him?
    And How do I tell him without making him want to run for the hills??!! #EhlersDanlosSyndrome #HypermobileEDS #ChronicIllness #ChronicMigraines #MyalgicEncephalomyelitis #ChronicFatigue #Relationships

    4 people are talking about this
    Community Voices

    Has anyone ever had a doctor‘s office hang up on you?

    I tried to call Baylor Genetics in Houston because my rheum just told me to call and get an appointment, but when I called the lady asked what the diagnosis was and I was trying to explain that I wasn’t sure because of some things. She then hung up because I was saying I wasn’t sure what type of genetic counselor he wanted me to see. I don’t know why but this made me so upset. :/ #Doctor #Genetics #HypermobileEDS

    3 people are talking about this
    Community Voices

    Yet another fall (Vent) #HypermobileEDS

    Sprained my ankle twice in the last two weeks thanks to hip subluxations. My knee has been cut open both times and I've ripped two of my favourite pairs of trousers. I'm not working at the moment, so it makes the loss of two pairs of clothes even more bitter. Im still recovering from whiplash in my neck from the first fall and generally, it feels like my body's been thrown down the stairs a couple times.

    I'm trying to tell myself I will feel better soon, but I'm mostly feeling annoyed with myself. I felt good yesterday morning and I was only going out to get milk from a shop 2mins away and suddenly, bam! I fell! I know I should feel lucky that I fell close enough to home for my husband to bring me my crutches but I mostly feel embarrassed from passer bys staring as I sat on the pavement. I wanted to get him chocolate from the store while I was there (he works from home) and I ended up feeling like I was more of a distraction then a help. #EhlersDanlosSyndrome

    2 people are talking about this