- I was diagnosed with Ehlers-Danlos syndrome in 2021 at age 59.
- I'm glad I didn't know about my diagnosis before because my childhood would've been different.
It all started with a simple trip to convenient care. I had picked up my 10-pound Yorkie and felt a sharp pain below my shoulder blade. It hadn't gotten any better in two weeks, so I decided I would get it checked out. I had no idea how much that visit would change my life.
The physician's assistant came into the room and examined me. She stepped back, seriously thinking before saying anything. She told me I had a muscle tear. She then asked if I had injuries like this often. I told her I did. She then asked whether I could bend my elbows backward or do a split. I showed her my double-jointed elbows and said I could do a split.
She then replied, "I think you have Ehlers-Danlos syndrome."
My first reaction was that I had enough chronic illnesses and didn't need another. She explained that this one may not require any more medication or treatment but that it was important for me to change some things, especially regarding my flexibility.
It's a genetic disorder
Ehlers-Danlos syndrome is an inherited disorder that you have from birth. It affects the connective tissues in your body, including your blood vessels and skin. In addition to the damage, it causes widespread pain and gastrointestinal issues.
I have described EDS to my friends and family as the disease you see on medical dramas where the parents are questioned because their kid is constantly bruised and injured. You really don't believe they're abusing him, but it can't be proved until a doctor comes up with the Ehlers-Danlos diagnosis.
Even though it took a long time for this to be presented to me, I was lucky to find one of the top researchers in the country right at my local hospital. Dr. Christina Laukaitis is a geneticist and physician who teaches at the University of Illinois' medical school and practices at Carle Foundation Hospital. She quickly confirmed my diagnosis and recommended a rheumatologist and occupational therapist who were specialists in the field.
The type of EDS I have is hypermobile. My joints are overly flexible, and my skin is stretchy and fragile. Since the body is made up of tissues connecting everything from blood vessels to muscles, tendons, and ligaments, this leaves your entire body open to problems.
Since EDS is not my only connective-tissue disease — I also have fibromyalgia — it's hard to tell which symptoms and pain are specifically from this disease, but my doctors have associated the degeneration in my back and other damage with things I had done before knowing I had the syndrome.
Having fun destroyed me
If my parents had known I had EDS when I was a child, my life would have been very different. I might not have some of the damage I do in my back, ankles, and wrists, all causing multiple surgeries. I might have protected myself from some of the muscle tears, tendon strains, and ligament ruptures. I might have been the "sick kid" instead of the "klutz" who was always getting hurt. But what would I have given up?
It would have been a very different life for me. I would have been protected from things that might have hurt me. I wouldn't have gone horseback riding regularly, which fueled my love of animals. I wouldn't have spent years in gymnastics, where I met my friend Jaimee, still a friend nearly five decades later.
I wouldn't have learned to glide on the ice, skating with friends in the sump by my house. I wouldn't have gone on all those high-school ski trips. I wouldn't have joined the roller-blading fad and found the miles-long path that led down to the beach.
I wouldn't be the person I am today if I didn't have those experiences. They say you can't go backward in life to change things that affect you in the future. I think that's for the best. I'm certainly not happy I have Ehlers-Danlos syndrome, but I'm glad I now know.
Now that I know
The damage has been done and can't be completely fixed. I've learned the changes that need to be made in my exercise. First and foremost, just because my body can twist and bend in all directions doesn't mean I should be doing that. I've had to make major changes in the yoga I do. I refuse to completely give it up. My exercise may be limited these days to isometrics, but I do whatever is doctor- and therapy-approved.
The other difference now is how repairs on my body are done. For example, after three failed repairs of torn and ruptured tendons and ligaments in my ankle, I found a surgeon who knew EDS and reconstructed my ankle with stronger tendon stitching and artificial ligaments.
I am also consulting with a neurosurgeon about the damage in my back. I've already had two major surgeries on it. The next ones will most likely include fusions and rods since Ehlers-Danlos can continue to cause damage and my back needs to be more stabilized.
It all sounds pretty bad, and I'm not denying that it is, but I can still say that I'm glad I got to be a child, a teenager, and an active mother before I knew.