This year I was diagnosed with Ehlers-Danlos Syndrome, a genetic connective tissue disorder. The obvious symptom of it was being hyper-mobile. In all my joints. To a detriment. This disorder erodes away at ligaments, tendons and cartilage. It explains all the painful lifelong joint dislocations and subluxations I’ve encountered, especially in my knees, hands and jaw. I’m a painter, and a pianist. It’s devastating to think about losing my ability to do either, but the truth is, Elders-Danlos syndrome could rob me of those passions. 
 
I’ve had more kneecap dislocations than I can remember. Literally. Unfortunately, it affects all of my joints too, including my feet, ankles, knees, hips, shoulders, elbows, wrists, all fingers, jaw, ribs and my back. It even goes further to affect my digestive system, neurological system and basically everything in the body that involves any kind of connective tissue. 
 
This year has really taken a toll on me mentally, physically, emotionally and financially. I've had bilateral complex knee reconstructions to correct a dislocation issue that was progressively getting worse. Having these surgeries meant missing months of work this year and struggling to keep up with bills. However, I'm so thankful for Dr. Avery, who was able to do this surgery for me! He is seriously the best of the best for knee surgeons.
 
Beyond my knee issues, the past couple of years my TMJ disorder has gotten much worse, as well as the joint soreness/stiffness in my fingers from daily hyperextensions. My recent dental X-rays showed deterioration of the left TMJ due to repeated subluxations. My finger joints are so weak that they bend backwards and dislocate even at the slightest pressure. It’s frustrating and it hurts. It literally affects everything I do. Picking things up, carrying things, opening water bottles, writing, typing, basically all activities of daily living and everything you use hands for.
 
I recently found out from my occupational therapist that I should be wearing finger splints on a regular basis to prevent my joints from going backwards. This will help preserve what I have left of my joints. These things are not cheap and unfortunately, health insurance does not cover them. The thumb splints are around $400 for each thumb and each finger is around $132 per finger splint, for a rough estimate of $2,120 for both hands. These will help prolong the use of my hands, prevent arthritis from developing now and help stabilize my joints to protect from ruptures and sprains. 
 
I recently went to see a geneticist in Boston, who specializes in connective tissue disorders. There are a couple of variants that affect the heart and lungs. I’m keeping my fingers crossed that I don’t have these!  Vascular EDS is the worst one with an average life expectancy of 48yrs. The others all have normal life expectancy. The only way to tell if you have any of the variants is by genetic testing. And again, my insurance doesn't cover these tests either. I have symptoms of three designated syndromes that he wants to test me for, including Vascular EDS and Loeys-Dietz Syndrome. The genetic tests are $3,200.
 
All of my painting, print, notecard and calendar profits are going towards getting these tests done and splints ordered. Any remaining funds will be used for continuing care, additional splints/braces/aids for other joints, physical and occupational therapy outside of what my insurance covers. 
 
It is so important to me that I don't lose functionality of my fingers, being an artist and a piano player. Although there is no cure for these disorders, I’d still like to know which type I have and what I’m up against. The anxiety of not knowing what is going to happen next was a big stressor for me this year. 
 
Being able to see a geneticist and confirming I do have Elders-Danlos syndrome was strangely a relief. Because it affects your body on so many levels, you start feeling like you’re whole body is just falling apart. People treat you as if you’re a hypochondriac like, “this person looks fine! What could possibly be wrong now!” At the same time, you can’t deny all the seemingly unrelated symptoms and you know deep down there’s something bigger going on. Having answers is important to me as I’d like to know what to expect and be prepared to deal with it instead of being surprised with another gift of disaster waiting at my doorstep.
 
If you would like to help me find answers, help me get medical supports/braces/splints and  continued medical care for this condition, please consider buying a painting, print, calendar, or making a donation towards this fund. Anything and everything helps, monetary or not. I appreciate you all and thank you for reading this. 
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Much love,
Becky