Discovering I Was Born Defective: Hypermobile Ehlers-Danlos Syndrome

My grandmother was in a wheelchair, diagnosed with multiple sclerosis. In an unusual twist, her sister, my great aunt was also diagnosed with multiple sclerosis. She lived to be 101-years-old and had all her faculties in place before she departed this earth. She also told me her ms diagnosis was false.

I remember looking at my grandmother in her wheelchair when I was around 10-years-old and wondering if I could end up bedridden, paralyzed, or unable to walk one day.

Then I skipped down the stairs and pushed the question from my mind.

Maybe I should have realized I was defective — but I didn’t. 

Growing up I had a lot of issues, but most of them were environmentally caused…now problems in my life are beyond nurture or nature…they started with defective genes.

I have hypermobile Ehlers-Danlos syndrome and to try and sum it up, my bones work, my muscles work, but the “glue” that holds everything together doesn’t.

That glue is collagen.

Collagen isn’t just the glue that holds your body together it is one of the basic components of protein.

There are so many complications and symptoms that arise from hEDS that I simply have to just shake my head, laugh, and say, “What’s next God, you obviously enjoy fucking with my life.”

I’ve only learned that my son and I have hEDS on May 23, 2019. I am still in a place of shock, adjustment, sadness, grief, sometimes despair, sometimes hope, and letting it sink in.

It must be devastating to have a sudden injury and go from a state of health to a state of disability overnight.

It’s also devastating to find out you were born disabled and just never knew.

The list of symptoms associated with hEDS is devastating. The symptoms I’ve experienced over my life have progressively become worse.

I’ve had eight children and they range in age from 13-34. I suspect 5 of them are hypermobile.

My son’s hypermobility isn’t even part of the criteria determined in the Beighton Score. 

Oh, how fun to have a rare condition and to be an anomaly to the medical community!

My son’s hypermobility in his wrists is off the charts.

It’s been a lot to deal with and the truth is it’s only just begun. 

I have found an online community for people who also have hEDS and it’s amazing to meet and talk with people who understand some of the bizarre symptoms I have experienced all my life.

There is no way I could list everything I experience but I did create my own list of “criteria” from my own personal experience…oh…that’s the other nifty fact about hEDS…no two cases are alike.

So how your body deteriorates from not having proper collagen manufacture will differ from the next person, even those in your own family.

Signs You May Have Hypermobile Ehlers Danlos Syndrome

1. Flat Feet
2. Flexibility without trying (can you easily bend over and touch your feet with your palms, flat against the ground?)
3. trick knees, trick elbows
4. You play sports but get injured more than everyone else
5. Mystery bruises that come from nowhere
6. You’re walking with friends and they have energy and keep going and you’re dying
7. You need a “recovery” day to recover from normal daily activity
8. Your joints hurt and you think you might have arthritis
9. Your joints hurt and are injured doing mundane tasks. You could literally sprain your ankle walking up and down stairs.
10. Your fingers have a hard time grasping things.
11. Your fingers do weird tricks and are crazy bendable and flexible.
12. You may have at one time or another dislocated a joint in your body…any joint…if it’s a joint…it can dislocate
13. You are crazy flexible 
14. You are crazy flexible
15. You don’t need to get up like other people to retrieve an item, you know you can bend your body in some wacky position and get it
16. You are crazy flexible but have stiff joints…it simply doesn’t make sense that you can be an arthritic contortionist..but here you are.
17. Your injuries and broken bones don’t make sense either. You keep getting injured in severe ways that other people don’t seem to be injured in.
18. You get random joint swelling…fingers and hands mostly
19. Your skin is super sensitive…fabrics can give you rashes or even cut you
20. Your skin is super sensitive…a light scratch on the back that makes others feel good leaves you in pain and with welts
21. You can see your veins clearly through your skin
22. People touch you and freak out by saying, “OMG Your skin is so soft…it’s like baby’s skin”
23. Sometimes your cuts don’t seem to heal right.
24. You may have had a hard time holding a pen or pencil the way the teacher wanted you to.
25. You may have naturally dark pigmentation under your eyes that aren’t related to eye bags. It might look red or purple at times.
26. You have weird sensations of pins and needles and twitching at random times.
27. Every day you wake up and something hurts. You never wake up pain-free.
28. You were one of the most flexible kids you knew. You could put your legs behind your head, do the splits, do backbends, and were comfortable doing so.
29. When you workout, you get injured and exhausted every time.
30. Exercising drains you of all of your energy and “recovery” from your workout is more than drinking a glass of milk to replace lactic acid.
31. You look completely fine on the outside but you can tell things are drastically wrong on the inside.
32. You have major digestive issues that make no sense.
33. You may have been called “double jointed” throughout your life.
34. You think you’re normal, but for some reason, you can’t keep up with your peers.
35. You tire easily but can injure yourself while sleeping.
36. You may wake up with bruises, rashes, welts, or visible marks on your skin because your blanket balled up in your sleep.
37. You may wake up in excruciating pain because your arm was under your head during your sleep.
38. Swimming is the only exercise that you can participate in without fearing a dislocation or injury.
39. You have strong muscles, are extremely flexible, but suffer intense joint pain, can easily dislocate joints, but become exhausted from “normal” activity.
40. People say you look young for your age…or you developed wrinkles early…
41. Brain fog
42. Pain and tightening under the heart muscle
43. The ability to “pop” your ribs as a child
44. Your joints frequently “snap, crackle, and pop” all day, every day.

I haven’t made any videos about hEDS, maybe I will. Until then, I’ll share this.

CharisseVanHorn

Charisse Van Horn is an artist, poet, and freelance writer.

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