Ehlers-Danlos Awareness

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May is a big month for me! It’s my birth month as well as both Mental Health and Ehlers-Danlos Awareness month! It was meant to be, especially because I wasn’t supposed to be born until June! I’m making a special effort to focus on these two causes and I’ll soon have an updatable page in the menu above for mental health resources! If there’s a site or organization you feel deserves a mention, please comment and let me know! I’d appreciate the input!

Every case of Ehlers-Danlos Syndrome is different and there are several subtypes. It’s believed I have Type 3 with and overlap of Type 1 symptoms. So, I either have the Hypermobility type or Classical type. It isn’t terribly important to know which it actually is at this point because research isn’t far enough along to identify the affected genes involved. Because of this, there are also no standard treatments or even an agreement on what helps or hinders in the way of physical therapy, medication, surgeries, etc.

Personally, I have had two joints surgically reconstructed pre-diagnosis. My right shoulder being the worst of it. My arm was ultimately hanging alongside my body as the ligaments and rotator cuff were stretched out and torn through. The second was my right ankle. After a trip and fall on poorly maintained stairs where I was attending school, I snapped the anterior ligament in a previously problem-free and unaffected ankle. Given the suspicion of EDS at the time, it was decided full surgical repair would be done as this injury greatly impacted a joint that could, in the future, be disabling. Despite the successful surgery, this is the outcome. The injury caused early onset arthritis and constant need for bracing. The landlords, by the way, refuse to acknowledge their clear disregard for safety, culpability and legal liability that has left me unemployable as an esthetician.

In addition to most of my joints, my spine, stomach, eyes, skin, uterus, heart and blood vessels are affected. Possibly even other organs I’m just not aware of yet. I have degenerative spinal disease from the base of my skull down all the way to my tailbone. My skin tears and bruises easily and wounds are slow to heal and often scar. My blood vessels are narrow and my heart rate has been consistently high, which can be a precursor to a stroke or sign of an aneurysm. Uterine rupture is a great concern and I could never safely become pregnant even if I am fertile (nearly 50% of women with EDS are infertile). A pregnancy would likely kill both me and my unborn child. I have a condition similar to endometriosis which causes me a great deal if pain and I require a hysterectomy, but after my most recent sexual assault, I have been avoiding this necessary procedure. If I could just find an understanding doctor! Surgery is contraindicated in general with EDS, but I am suffering and my uterus might be a ticking time bomb.

My joint pain had been so severe lately that I’ve been avoiding leaving the house unless necessary because my rollator (walker) doesn’t cut it anymore and I have no one to push my in my wheelchair nor any way to get my power chair out of this house. I live in my bed mostly. I’m laying on it now, typing this on my phone. My hips hurt so badly I could cry and I still feel a little loopy for giving in and taking one if my meds breathrough pain. I hate this feeling.

Ehlers-Danlos isn’t simply extreme flexibility and weird skin, it’s debilitating for many patients. For me personally, my living situation is causing a rapid progression of the disease that could be avoided if the government cared about the disabled in the least bit. I might end up severely disabled anyway, but from what my doctors tell me, accessible housing and an independent lifestyle and help from aides when needed could greatly improve my prognosis.

I’ll be 32 on Thursday. What 32 year old should have to wonder if she’ll even be able to care for herself anymore by their next birthday?

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3 thoughts on “Ehlers-Danlos Awareness

  1. Wow…really well done. EDS is so hard to live with. I was recently diagnosed about 4 months ago and I can’t believe how quickly my life has changed within the past year. It sounds like you have been through a lot and I keep you in my thoughts and prayers. I also have type III and possibly type I. Your right about the research though and how it’s still kind of cloudy. I wish you the best and a very happy birthday. I hope things start looking brighter for you (also written in bed with my phone due to stupid pain). All my best!
    <3Claire

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    • Thank you, Bella! So happy to have you as a reader! I’m sure we can relate a lot, especially being that we were both diagnosed only recently! I really appreciate your prayers so much, and you’ll be in mine, too! Hopefully the next NIH study will not lose funding. I had planned to take part and travel to DC, then sadly found out it had been canceled. I gave yet to find a doctor familiar with EDS within a 300+ mile radius! I hope for both of us that getting the word out changes things! xo Dani

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      • Thanks Dani! I sure hope so as well. I see a doctor who has an office in buffalo (where I live) and is a dysautonomia specialist. She is on medical leave now so I have Skype and phone appointments with her. I know she sees people from everywhere so if your interested I could give you her name! Good luck love ❤

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