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Last week I attended the Ehlers Danlos National Foundation conference. I wasn’t prepared for how much those 3 days would change me.
I get to the top of the escalator and suddenly I am surrounded by people like me- people living with or raising a child with Ehlers-Danlos (EDS). Immediately I am put at ease.
But that is when I see the:
The service dogs.
My sense of ease is now gone and is replaced with overwhelming sadness. I am no stranger to braces, as I sit here and type, I have 11 braces just on my wrists and hands; it is the mobility tools that make my heart sink. It forces the reality of this disorder on me and I am not ready for that.
Over the next few days, I sat in on presentations on how EDS affects every part of the body, learned ways to manage pain and the best ways to keep joints functional. The presentations were fantastic, but it was the people I met that were the highlight of the conference.
Within an hour of arriving I was in line to be fitted for a bilateral hip brace and shoulder braces. The woman behind me said she needed the same, so instead of each taking up a representative’s time, we did our consult together. It wasn’t until the next day that I learned her name. It didn’t matter that we had met just minutes before, there was a strange familiarity and comfort.
Meals were served in an overwhelmingly large hall with at least 50 tables. Although I didn’t know really anyone, it didn’t matter. At every table, there were people who understood the struggles and had words of advice to make the good days more frequent. The braces that I wear on my fingers that cause others to stare with questioning faces attracted new stares- stares of envy.
While I don’t know what progression this disorder will take on me or my kids, or if one day we will need the mobility tools that terrified me that first day, I do know that if it comes to that, things will be ok. For so many years I thought my family was alone in a fight against and unknown disorder. Now I know we are not alone and that is a wonderful feeling.
Miranda is a Navy wife and mother to three kids: Hailey, Josie and Teague. All three have a swallowing disorder, Teague has ASD and Josie has Chiari. She was recently diagnosed with Ehlers Danlos syndrome. Miranda is the VP of Community Outreach for the Military Special Needs Network. You can contact her at MirandaFort@MilitarySpecialNeedsNetwork.com
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