37 years old, lives with Ehlers-Danlos Syndrome

“Since I was born, I have had asthma and lots of allergies. At 6 years old, I started having back and shoulder pain. But as you probably guessed, the doctors didn’t take me seriously. Every time I had to lift something heavy, I would dislocate my shoulder.

Once I hit puberty, I kept spraining my knee while doing sports. So, I stopped doing sports. But that wasn’t enough. Even walking with flat shoes was an issue: I kept twisting my ankle and spraining my foot. From there the problems with my joints kept coming: wrists, hips etc.

After having my second child my health declined. But I felt I couldn’t tell anybody because up until then no one had believed the pain was real. It was my own fault because I wiggle and laugh too much. Although I cry too – from the pain. But only when I am by myself.
At 33 years old I got cancer. At 35 I had a botched knee surgery. At 36 I had back and neck surgery. Then I was recommended a brilliant doctor, who finally diagnosed me with EDS, a genetic connective tissue disorder. I was so relieved to finally have a name that explains my symptoms!!! I started connecting with other people living with EDS and didn’t feel so alone anymore.

I received psychological support from ALAN, which helped me work through a bunch of things. Chronic pain and unprocessed childhood trauma are a toxic mix.

Currently my body is being held together by orthopaedic products, sexy compression gloves and stockings. I use a stick to walk and might start using a wheelchair soon. I also have issues with my digestion, blood vessels and skin due to the disease.

Unfortunately my kids are starting to display symptoms as well. But at least we know why. When I was their age, no one believed me. At the beginning I always felt the need to explain why I am not feeling great or why I am limping etc. But now I don’t care anymore. The disease is here and it is not going anywhere.

The last few years have not been easy. But I have an incredibly supportive life partner and amazing kids that give me all the strength I need to keep fighting. Together we can overcome anything.”

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