23 Signs You Grew Up With Ehlers-Danlos Syndrome


Although Ehlers-Danlos syndrome (EDS) is a condition you are born with, it may take many years (or decades) before you are diagnosed. During childhood, it might just seem like you’re more flexible or prone to sprains and injuries than the other kids. Doctors might assume your discomfort is just a result of “growing pains.” It may take the progression of several of your symptoms before doctors are able to recognize you have EDS.

After your diagnosis, you might look back and realize that many of your childhood “quirks” were actually early signs of the illness. We asked our Mighty community to share signs that they grew up with Ehlers-Danlos syndrome, which they can now recognize in retrospect. Perhaps some of these will sound familiar to you, too.

 

Here’s what the community shared with us:

1. “I was always extremely flexible as a child, even more so than other children my age. At the time it was a benefit because I was into gymnastics, ballet and cheerleading. Not knowing that all the flexibility was a bad thing [and] would later cause me so many problems.”

2. “I can sublux both shoulders without conscious thought. As well as other joints that snap, crackle and pop. I just thought I was double-jointed.”

3. “Waking up with my thumb swollen and bruised. It wasn’t until getting my EDS diagnosis and having my thumb dislocate during the day that I realized why it happened.”

4. “Dislocating something and not realizing that’s what you were doing.”

5. “All of my teachers thought I was a hypochondriac because I was always wearing wrist or knee braces and going to the nurse with a headache or to get ibuprofen.”

6. “My parents used to joke that they could fold me up and put me in a suitcase. I was always underweight, had frequent nausea and low appetite. I was easily fatigued, and my fingers would hurt when folding laundry.”

7. “I couldn’t hold a pencil correctly. I was told I had poor fine motor skills in second grade and was forced to correct it. Twenty years later I was diagnosed and learned it’s common for EDSers to use a modified grip. I still revert to my old grip sometimes.”

8. “Taking more time than others to do things and taking the extra time to learn how to do things without injury because of so much pain growing up [and] not knowing what it was from.”

9. “Constantly being diagnosed with ‘growing pains.'”

10. “I was always flexible but it wasn’t recognized as medically significant until later in life. My first adverse symptoms looking back were that I had GI issues from infancy.”

 

11. “My elbow kept dislocating. I also had many soft tissue injuries as a kid. It wasn’t until I really injured myself and it wouldn’t heal [that] my doctors finally put it together.”

 

12. “Having more splints and braces then clothes.”

13. “Constant tiredness, ‘growing pains,’ bruising and splitting the skin on my knees all the time, only wanting to wear ‘comfy’ clothes (the softest materials I could find) and being born with severe bilateral hip dysplasia.”

14. “My sister and I weren’t allowed to hold hands when we were younger because we would dislocate each others’ arms. Turns out we both have EDS.”

15. “When sitting twisted up like a pretzel with your feet behind your head playing video games was a totally normal thing for a Saturday afternoon… and you had no idea that wasn’t ‘normal.'”

16. “I once dislocated my jaw while eating a bowl of cereal. I avoided that cereal for years, because I honestly believed it was the cereal’s fault.”

17. “I was always spraining my ankles. I was always able to freak people out with the way my body contorted, and I thought it was so funny. I wish it was as funny now as it was then.”

18. “I was labeled a ‘clumsy child’ and teasingly called grace. I always had something sprained, mostly my ankles. I had broken all my fingers several times and dislocated joints daily. Because of all of this I started to carry Ace bandages of varying sizes with me at all times just in case. I still carry three or four when I leave the house and have dozens of different types of braces for all different parts.”

19. “I go up and down the stairs more or less sideways. It stops my knees hurting so much but I didn’t really notice it until someone pointed out that your knees aren’t supposed to hurt or go backwards.”

20. “I constantly had GI issues and a weakened immune system, and I was getting injured so often. I always thought I was just clumsy and more susceptible to illness, until I got my EDS diagnosis.”

21. “[A] P.E. teacher mocked the way I ran when he forced me to do cross-country training. Turns out I ran like that because my hips/knees hyper-extend.”

22. “[I remember] my mother taking me to the doctor at 8 for neck and back pain issues. I remember her saying, ‘What 8-year-old has neck and back pain?’ I felt old.”

23. “When you have to ask other kids how your knees and elbows are supposed to bend.”

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