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  • Writer's pictureSami

Where To Start?

I'm realizing the beginning of my story difficult to find; most likely because it's crazy to think about how long ago everything started.

Let's start here:

After years and years of joint pain and a variety of symptoms, in the Summer of 2021, I was officially diagnosed with hypermobile Ehlers Danlos Syndrome.

If you don't have EDS yourself, you most likely have never heard of it. I myself am no expert, but through books, websites, and doctors this is the gist of what I know:

  • EDS is a disorder of connective tissues (often involving collagen)

  • There is not a specific number, but EDS is estimated to be found in about 1 in 5,000 people.

  • There are 13 different subtypes (hypermobile being the most common)

  • EDS is most commonly passed through family members

Here' s a quote from The Ehlers Danlos Society:

(EDS) is characterized by joint hypermobility (joints that move further than normal range), joint instability (subluxation (partial separation of the articulating surfaces of a joint)) and dislocations (full separation of the surfaces of a joint), scoliosis, and other joint deformities, skin hyperextensibility (skin that can be stretched further than normal) and abnormal scarring, and other structural weakness...

One of the most important lessons I have learned is that EDS is a spectrum. Every person that has EDS does not have the exact same symptoms. The disorder can present so differently, it is no surprise that EDS often goes under diagnosed (not to mention that so many doctors/medical professionals don't know what EDS is).

So why the Blog?

I am a full-time dance teacher, and I refuse to give up doing what I love. So what do I do? I've tried different treatments, but have yet to find something concrete that works for me. Maybe I will just end up coping with the daily pain, but maybe there is something out there that will work for me. I'm not looking for a cure, just something I can rely on to help.

In my self research about EDS, I found there aren't a wide range of personal stories. There are a few Youtubers, short stories on medical blogs, but I have yet to find a story like mine. I want to document my different experiences for myself to look back on, but also I thought putting out the information might just help someone else. I have found writing helps me process what my body is going through, and makes me more at ease with this journey.

Moving Forward:

If you made all the way to this paragraph, thanks for reading. I plan on writing my journey to being diagnosed, but also anything significant that happens along the way. Feel free to subscribe if you want to be updated when I post (or not: I am not planning on making this a profession😉).

Be Brave. Stay Kind. Much Love.



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