My EDS Challenge Day 17- Childhood in Life with Ehlers Danlos

  • May 17, 2021, 8:28 a.m.
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I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.

Day 17- Childhood

I almost wish I didnt have such a good, mostly normal childhood (in terms of EDS symptoms). I imagine the grief process would have been easier for me now, if I was always sick and could never have a normal life rather than having one for 24 years and then losing it.

Obviously there were warning signs and symptoms. I had horrendous on and off joint pain and restless leg syndrome. I did deal with near fainting and partial fainting episodes but I attributed it completely to anxiety. I had pelvic post voiding pain episodes that I had a hard time verbalizing. I was scared of doctors and invasive testing so I just normalized my symptoms and lived with them because they werent life altering.

I also had HORRENDOUS tooth crowding. I also have a bad receeding gumline and somewhat mobile teeth. Fun times.

Had there been more education about HSD, my mom and I might have been able to figure it out earlier. At least one of the doctors might have mentioned it at some point. EDS and HSD is a spectrum disorder.. Not everyone has the same severity of symptoms. Even people with the same type. I think we need to look at children a lot closer because even tho they may seem “fine” now, there may be pain they cant verbalize or ways we could educate them to protect themselves for what could be coming later down the pipe. I also have a small pulmonary valve stenosis heart murmur (that drs can only hear when i turn my head one way, odd) which isnt exactly uncommon but all these tiny little things do add up when you look back on them all. Very glad I have the puzzle board now.


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