My EDS Challenge Day 18- Word to Parents in Life with Ehlers Danlos

  • May 18, 2021, 3:01 p.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 18- Word to parents

This can be a continuation of yesterdays journal prompt about childhood… My word to parents: When youre planning on having a child, please research rare diseases. Think about any symptoms or ailments that run in your family, even if you dont have a diagnosis. Dont dismiss things. Theres always a reason for medical stuff happening. EDS & HSD is hard to really see in a kid unless they have life threatening symptoms and not all of us do. Most young children are naturally hypermobile and flexible so dont rely on joint symptoms alone to tell you something is wrong. Most of the time the less severe (relatively speaking) types of EDS & HSD dont get discovered until late adulthood. Parents: educate yourself. Dont rely on one small little prenatal/ post natal DNA screening. Ask questions about what is being tested for. Keep in mind there are many things that are genetic that may not have difinitive tests or better yet things that do that doctors are straight up not testing for because it doesnt fit neatly into the box of what they were taught in medical school.

Dont blame yourself if something is missed. We dont live in a world where doctors think outside the box generally speaking, outside of their specialty. They simply dont have enough hours of the day. Be your own advocate and be your childs advocate. The sooner a child has a diagnosis, that gives them a reason for their suffering and they will feel less crazy. They will be able to speak up for themselves. And you can have the correct vocabulary to educate other adults in their lives for how to take care of them and teach them how to move and exercise and eat right so they have the foundation for their adulthood.


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