VEDS

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    Where can I start writing my story online?

    I want to put my story out there for people to read. I have Vascular Ehlers Danlos Syndrome and Complex Post Traumatic Stress Disorder among a list of other medical issues that affect my daily life.
    In the past I have had two big breakdowns with my mental health which brought me to the hospital for some stays and many emergency room visit for suicidal ideations which turned into the eventual two attempts. There have been other times where I’ve had the ideations but was able to seek help before the hospital and even those times were not always great.

    At times when I went to the hospitals for help I was laughed out and told to come back when I was serious. I was told other times that the Inn was full and I’d have to convince someone who cared, and that it was a shame my parents couldn’t still spank me. I had just started cutting on my arms at the time, after maybe a year of cutting only my legs. I’ve been told twice to look into physician assisted suicide and stop wasting their time. Some were more concerned with my weight than my mental health at all. I went to hospitals with my “kill kit” and walked out that night or maybe after spending the night with a friend in the room but I had bitten my entire mouth trying to resist the urges to lock myself in the bathroom for the ten seconds it would take me to execute the multiple plans I already had in place. Then morning came and I begged the psychiatrists for help and they told me if I could make it through the night then I was fine. And that I was taking up space in the er for nothing.

    Some doctors were great, others were terrible. It just turned out that every time it was a doctor I was counting on they failed me miserably and sent me spiraling mentally. I want somewhere I can write about all of this candidly without it being on like Facebook kinda thing. Where can I do that in a better format than here? #Suicide #CPTSD #VEDS #EhlersDanlosSyndrome

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    Pediatric Ascending Aortic Dilation/Aneurysm with hEDS diagnosis - uncommon and worrisome! #Aneurysm #EhlersDanlosSyndrome

    Hello all,

    I have been struggling the past few days with something really heavy on my mind and heart.

    I could use some friendly advice and love.

    I recently was triggered to remember something that I try not to think about a lot because it makes me cry and feel totally helpless.

    My son was diagnosed this year with a life-threatening condition called, Ascending Aortic Dilation/Aneurysm that has to be monitored every 6-12 months.

    Its 2.0.0.16 cm last we checked and the average adult aorta sits at 2.0.0.6 cm so it's already too big for his little body.

    For connective tissue diseases, I know to try and remain calm until it reaches 4.0.0.5 cm.

    Waiting 'til 5 -5.5 cm is not an option with fragile connective tissue.

    I've been reading medical journals since 5 am due to insomnia to better understand what we are up against...but it breaks my heart.

    I learned that the aneurysm can grow faster with connective tissue diseases...

    Doc told me eventually he will need the aortic replacement surgery... so I did some digging to learn about the process.

    There are only 300 surgeons in America who do this surgery and I don't think we're near any of the reputable ones.

    (The photo is a screenshot of a portion of another (grown) man's story published in a wall street journal describing the surgery process.

    Full story here: online.wsj.com/public/resources/documents/hb3.htm)

    My son is amazing. He's so incredibly intelligent and intuitive.

    He's 9 and he can't help but fill the room with joy.

    He's thin and translucent. He looks like the #VEDS poster child but tested negative for vEDS, #LDS, and #MFS.

    He is my motivation to become a doctor and keep pushing for change in the medical system to support patients with #RareDiseases because we lack support, care, and access to treatments and proper diagnosis.

    My son, my mother and I were all diagnosed with #HEDS this year.

    My mother has Aortic Sclerosis and Thrombocytosis.

    My son has PFO, Murmur, and Ascending Aortic Dilation and a clotting disorder similar to von wildebrands.

    I have PFO and POTS, paroxysmal tachycardia, and right axis deviation.

    We all have multi-value insufficiency/about 6 generations of heart and joint problems/familial hyperlipidemia.

    We are all currently undergoing whole genome sequencing to see what else could be going on since hEDS doesn't usually cause all this with the heart.

    It could be inherited familial thoracic aortic aneurysm. #TAA

    I just don't know what to think.

    I find out really soon and I'm a bit nervous.

    I'm prepared for the worst so that I don't get my hopes up for the best.

    Educating myself to make sure I can ask the right questions.

    But I feel so alone. I cant even find a support group online for this condition, esp pediatric.

    The thought of them having to put him as "clinically dead" for 45 min to complete the surgery is alarming.

    The fact that I may not be around by the time he needs it due my health issues scares me too.

    I need support

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    vEDS Virtual Conference July 30-31

    Community and Healthcare Professionals Event July 30-31.

    Join us for our EDS ECHO Summit Series: #VascularEDS (vEDS) virtual event, with leading expert presentations on care for individuals with #VEDS and comorbidities. CME/CE/CEU credits available: buff.ly/345QNxy

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    vEDS Virtual Conference

    Community and Healthcare Professionals Event July 30-31.

    Join us for our EDS ECHO Summit Series: #VascularEDS (vEDS) virtual event, with leading expert presentations on care for individuals with #VEDS and comorbidities. CME/CE/CEU credits available: buff.ly/345QNxy%3Ctopic%20id= " originalText="https://buff.ly/345QNxy#EhlersDanlosSyndrome ">

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    Am I the only one?

    Has anyone been diagnosed with #VascularEDS ? Or #Hypermobility and had a dissected or ruptured artery?
    #VEDS
    #HEDS
    #EDS
    #VAD
    #VertebralArteryDissection

    I tested negative for all genetic markers re: connective tissue disorders, including Vascular Ehlers Danlos Syndrome , but I did have a Vertebral Artery Dissection several years ago. I have other EDS symptoms. Still no answers. Wondering if I’m the only one. So I’m assumed hEDS. However, my cardiologist thinks I have some type of vascular disorder, so it is like I have vEDS, but no clue.

    Please share if you have had a similar experience!

    Question

    Hey Zebras! How many of you are talented in things like music, art, sport?

    Apparently being hypermobile gives us advantages in life aside from just being particularly difficult. How many of you are talented in means of art, music, sport, etc?
    My specialist believes that hypermobility gives us a strong advantage in these things. Most zebras I've met are gifted in one or sometimes all of these categories. So tell me, what's your talent?

    #EDS #EhlersDanlosSyndrome #hypermobile #Hypermobility #ChronicPain #ChronicIllness #jointhypermobility #HEDS #ceds #VEDS #JointHypermobilitySyndrome #hypermobilityspectrumdisorder #begnignjointhypermobility

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    Learning to Validate my own health

    I really wonder how many of us were the "hyperchondriacs" or over reacting to every tiny ache and pain.
    The effect this has had on me was disregarding my own health untill a point where now I need genetic testing for #VEDS
    learning to validate my own health and see a doctor when I am unwell has been certainly life changing.
    I now realise that most of what I experience is symptomatic and to let myself take it easy sometimes or to go see a doctor when usually I may put it off. #EhlersDanlosSyndrome

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    Why my deadly diagnosis comforts me.

    I’ve been in chronic pain since I was 12. Some days are more bearable than others but since I was 12 I haven’t had a single pain free day.
    And psychologically I was already irreparably damaged and traumatized from a very young age.

    It took me over a decade of increasingly severe symptoms and several near death experiences before I was even given a diagnosis. Ehlers Danlos Syndrome. I was only diagnosed a year and a half after gastroparesis very nearly starved me to death to the point of permanent heart damage and near-heart failure.

    My doctor said identifying my subtype didn’t matter because only one, particularly rare subtype impacted my prognosis. With vascular subtype an aneurism typically gets you around 40-50 years old.

    Fast forward to 6 months ago and I suffer a massive pseudoanyeurism in my arm that results in compartment syndrome and very nearly amputation. My left arm is still attached but very nearly useless.

    Before we knew I had VEDS I was terrified at the prospect of old age. I already have the joints and pain of an octogenarian. I’m already almost bedridden by pain sometimes. The thought of it all getting worse and worse into my 70’s or 80’s was something I was not willing to endure. I knew I would kill my self before reaching that age because the suffering would simply be intolerable.

    The idea that an aneurism could kill me relatively quickly and painlessly (depending on location and severity) was actually comforting to me. And it could kill me a week from now. Or a year. Or a couple decades. So I live each day like it could be my last because for all I know, it might be. And I’m 100% okay with that. Because fighting to survive is exhausting when it’s been for as long as you can really remember #EhlersDanlosSyndrome #PTSD #CPTSD #Survivor #VEDS
    #AbuseSurvivors #RapeSurvivors