I’m thankful for my early diagnosisPosted July 8, 2019
My name is Reavie and I am 16 months old. My mom and dad had never heard of EDS before they had me, although it turns out my mom has it too.
We knew something was up when at 6 months, before I was crawling or even rolling around, my arms were covered in bruises. It has been a long journey to diagnosis for someone as little as me, but my family and I are thankful for knowledgeable doctors who believed that my parents weren’t causing the bruises, even as test after test came back normal. We know that not all EDS families are this lucky.
After 13 years of symptoms and many doctors, no one ever could put together that my mom had EDS. My pediatrician must be pretty smart because she was the first to suggest it. She told my mom that she was dreaming about me and in the dream, she figured out that I had EDS. My parents believe that my pediatrician’s dream was sent from God so that we could get the help we needed. My pediatrician sent my family to a geneticist who did genetic testing on my mom and I and then diagnosed my mom with hypermobile EDS (hEDS). Until I’m older and can be clinically assessed myself, my diagnosis is only “assumed” through family history, but that’s good enough for now! The news came as both a relief and a shock to my family. We were so glad to have answers but are still scared as we wonder about the future and how EDS will look for me and my mom.
Now, I’m a happy little girl! I love to roll balls, read books, and eat lots of food. I can’t crawl or walk on my own yet, but physical therapy is helping me build up strength and confidence as I use my wobbly joints. I might always have bruises that attract strange looks in the grocery store, but they don’t bother me much!
I’m glad that I will grow up understanding what is different about my body and never have to worry about not being believed or people thinking that I am weak or exaggerating my symptoms. I won’t have to go from doctor to doctor looking for answers; I’ll have the help I need. I get to grow up knowing that my body is so strong, even if it is a little different from my friends. I’ll know what I need to do to protect my joints, so hopefully they don’t hurt me when I get older. My doctors will know what to watch for as I grow so that I can stay healthy and strong. I’m thankful for my early diagnosis. And so are my mom and dad!Tags: Coping, Diagnosis Journey, hEDS, hypermobility, Kids, parenting, Self-Advocacy, Support System
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