Rare Disorder

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    Pinterest=🙏🏻👏🏻

    Nothing is more comforting to me than searching Pinterest in how I’m feeling when I become the monster under the bed off and on during the week. I have thousands of heartfelt quotes which in a way keep track of how I’ve been feeling over the years in times of depression and anxiety/panic. Most times it’s within my relationships; whether it be my friends or family, or my lover. It’s sometimes about when I feel alone in life with having Albright’s Hereditary Osteodystrophy: one of the most rare medical conditions in the world. I have NEVER seen another person like me. Ever.
    Majority of the time, people tell me to suck it up and that I’m not as bad as some people. Sure. Maybe it sounds easy to the “healthy” person, but not to the person with feelings of alienation and misunderstanding. I have my breakdowns when I can’t seem to get out what I want to say the way I intended it to come out, I have times when I get so sensitive that as soon as someone sounds like they’re disappointed when they call me over I begin tearing up. I have anger issues when I’m not being listened to and when I can’t do something right. I have crying sessions in my room when my family comes home for holidays because I never have anything to contribute to conversations. And just about every day so far, I’ve been feeling depressed because I cant seem to grasp how to communicate with anyone. I have massive fears of judgement and imagining myself in the later half of my lifetime makes me cringe because I’m not sure what’s to come. I make so many goals for myself but yet nothing goes right.
    All I can really say is that this is this one thing that keeps me padding myself along. Having being born with such obsticals has created mental health issues which have manifested over the years to the point where I’m not sure who I am anymore. That’s why I created my board called “Finding Me”. #Anxiety #Depression #FunctioningDepression #PanicAttacks #MentalHealth #Memes #Trichotillomania #alone #ADHD #RareDisorder

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

    Here's what some patients affected by rare disease shared. Do you agree? Take our survey and let us know how covid has affected you: bit.ly/2STxzt7

    #RareDisease #RareDisorder #RareDiseaseParenting #RareAndMighty #Rarebleedingdisorder

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    Just a reminder

    Let’s build the knowledge bank that we all need, to better understand, talk about, and manage rare disease.

    Learn more: bit.ly/3w1HE4F

    #RareDisease #RareDisorder #RareBloodDisorder #RareHeartDefect #RareCongenitalDisease #RareDiseaseParenting #RareAndMighty

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    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

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    1 rib down, 1 to go

    Recovering from my first thoracic outlet decompression surgery. My symptoms from MdDS have skyrocketed and I have a long journey to recovery, but I’m home and improving every day. #TOS #MdDS #RareDisorder #journeytorecovery #

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    Little “wins” for the week

    I made bread for the first time and DID NOT mess it up. I cannot express how happy this made me. What was your “win” this week? Caregiving doesn’t leave much time for anything sometimes. This dough comes together in MINUTES and all you have to do is toss it in the oven for 30 minutes.

    #winning #Accomplishments #ChronicIllness #RareDisorder #Caregiving

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    Does anyone know of a rare disease that presented as recurring viral infections?

    Sore throat, muscle aches, stomach/bowel problems, fatigue, joint and spine pain, headaches, etc. #RareDisease #RareDisorder #AutoimmuneDisease #Arthritis #chronicinflammation #ChronicFatigue

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    BINGO TIME!!!

    I thought that this bingo card might help you with my recent post about self care routines! Especially if, like me, sometimes you don’t know where to start!

    #Caregiving #RareDisorder #Cancer #SelfCareChallenge

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    Tell me something good! #DistractMe

    There was a LOT of ugly in the world today 🌎 I invite you to put anything that is stressful aside and focus on the positives.

    Tell me something good that happened to you!
    Tell me a joke! Or even something that just makes you happy!

    #Caregiving #Disability #ChronicIllness #RareDisorder #Cancer

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