Hypermobile Ehlers-Danlos Syndrome


It’s May. Which is apparently all of the awareness months. Feels like some sort of conspiracy to be honest. But one of those is Ehlers-Danlos awareness month. (EDS)

All forms of EDS are genetic disorders of the connective tissues. Connective tissue makes up pretty much everything in the body, other than the muscles which means the symptoms and signs can be prevalent throughout the body and there are a number of common comorbidities that arise.

I’ve recently been diagnosed with the Hypermobile type of EDS (h-EDS). And I’m still kind of in denial and maybe that’s because I’m not that bad. I’m not that hypermobile and I’m certainly not flexible because I have v tight muscles. I score 5 on the Beighton Scale, but also have hypermobile ankles, hips and shoulders and suspect my neck is hypermobile as I am getting more issues there. Weirdly I do partially dislocate parts of my body that aren’t hypermobile, but based on things that have been said to be by physios about how I stand and how that’s caused other issues, it’s likely I was in the past.

There’s no genetic test for h-EDS yet and diagnosis is made by ruling out other conditions including other forms of connective tissue disorder and EDS if you look like you may be a candidate for one of those diagnoses and by ticking a certain number of boxes based on hypermobility and wider manifestations of a connective tissue disorder. (Stretchy skin, velvety skin, Easy bruising, mitral valve prolapse etc) Family history and actually being symptomatic is also taken into consideration.

You don’t need family history to get diagnosed or even to have EDS as spontaneous mutations are possible, and it could be that previous family members are less effected than you or doctors just failed to diagnose them and that’s why there’s no family history.

I don’t have a diagnosed family members but I don’t think I’m a spontaneous mutation.

Denial or not a diagnosis of h-EDS explains my entire life. It explains the proprioception issues I have, it explains my bad handwriting. It explains why I went through I phase of spraining my ankles every two seconds and them not being the same since.

Me constantly having injured ankles was the first time I experienced people not believing me when I said I was in pain. I was 8 and my teachers believed I just wanted to sit out of PE. I see how that can be interpreted, especially when it happens week in and week out but that wasn’t the case. I actually loved PE, especially back then as I had friends to go with. But the impact of running wasn’t good on my ankles. My parents belived me at this point although they didn’t take me to a doctor and just said I’d sprained my ankle.

It explains the constant nausea I experienced since the age of 10 until I figured out how to cut things from my diet and control what I ate to manage it as best as possible. Now I’m able to start reintroducing things. The headaches, the knee pain caused by running and horseriding. I eventually quit horseriding because an hour of my feet in the stirrups was just so uncomfortable. Let alone two. The shoulder pain the hip pain.

I could go through my life bit by bit in order of what joint went wrong first.

I now have multiple daily subluxations (partial dislocations), many of which the outsider is unlikely to notice. They’re not all excruciating traumatic experiences. And often I hide it. No one wants me to share very single subluxations and I don’t have the time and energy for it. I fully dislocate less often but it happens and it hurts. My muscles tighten up to prevent these things from happening and that also hurts. I’m in daily widespread pain. I also suspect my bladder issues are EDS related and although they’re not bad by EDS standards it still hurts, and it’s a nightmare. I suspect I have retention issues and it means the more I need to go the less I can go. I have painful bladder spasms and get frequent UTI’s. I constantly need to go because I never get the feeling that I’ve emptied properly. I’ve also experienced incontinence which was embarrassing when I was younger. It has a very real effect on my life.

And that’s why we need awareness. Not just to the general public but also to medical professionals who still struggle to connect the dots. It takes a lot of emotional energy to go back and forth to the GP over what is often taken as 101 different symptoms. It’s exhausting to tell each new doctor the same story. It’s exhausting to get 101 referrals for all the issues you have, and that’s why I haven’t yet solved the entire puzzle.

I have so many symptoms that it’s simply overwhelming. We need allies, we need advocates we need doctors to stop putting it down to “growing pains” or some sort of hysteria or psychological distress.

We’re really sick, albeit at different levels of sick and the earlier the diagnosis the more chance of people not deteriorating as much as they otherwise would.



7 thoughts on “Hypermobile Ehlers-Danlos Syndrome

  1. geckojudo May 3, 2020 / 2:46 pm

    Hey, I’m sorry that you have such a terrible disease, but I’m glad that they may have finally diagnosed it so that you can get some help, if there’s any to be had. I don’t feel sorry FOR you, though — in other words, I don’t pity you, because you’re a strong person. You’ve got this. I’ve read your blog quite a bit and you don’t feel sorry for yourself, so I won’t, either. You are an inspiration to others who have a bad hand of cards dealt to them but still play the game of life, and play it as well as they can. I applaud your efforts and hope you continue to stay strong, both for yourself and for others. I must say that I’ve been very impressed with your grit. Speaking of “grit”, there’s a book titled “Grit” and it’s written by a woman named Angela Duckworth, copyright 2016. I’m reading it right now and it’s a fantastic read! Not only is it a page-turner, but it addresses what talent has to do with success vs. what effort has to do with success, and, as the book says, “effort counts twice”. Your efforts in life are extraordinary — don’t ever let anybody tell you they aren’t. Success is one of those things that society needs to re-examine its definition of, too. I’m totally and permanently disabled from PTSD, so people wouldn’t think I would be able to do anything competently, right? Wrong! Same with you. You have a disease that people don’t see, and they think you’re faking it or something (been there, done that, all the time) to get out of doing things. Ignore them and find your passion and persevere at it! You got this! I’m rooting for you!

      • geckojudo May 4, 2020 / 3:33 pm

        If you can, get the 2018 edition published by Scribner Publishing that has the “Seven Questions” the author gets asked the most in the back of the book. More reading material (more bang for your buck)! Actually, I just ordered two more copies — one for my doctor and one just to have in case I found someone who wanted it and would appreciate it. Would you like me to send that extra copy to you? I know you would enjoy it and you would definitely appreciate it with all the struggles that you live with bravely day after day! Let me know! I would gladly send it to you if you would like!

      • Spooonielivingfree May 5, 2020 / 8:48 am

        That’s such a kind offer but no worries, I can buy a copy for my self relatively inexpensively.

  2. Grace Langley May 4, 2020 / 12:50 pm

    Hello, fellow Zebra! I’m still waiting for my official diagnosis, but I’m thankful that I’m now on my journey. I empathise with you so much, EDS is far from fun sometimes 🙂

  3. Chloe's World May 9, 2020 / 8:21 pm

    Making people believe you have pain is really really really hard and looking back it makes me want to go up to my PE teacher and tell her that I wasn’t being lazy when I collapsed on the floor but it was my joints giving up. I wish the first surgeon I met realized that I wasn’t faking it but genuinely couldn’t put weight through my leg. It makes me sad looking back but it has made me who I am as a person and in a way I am thankful for the character building

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