The story of Linda
Thanks for reading my story. I am 54, female and live in the US Midwest. After hitting the top of my left ankle with the cabinet door in 2003, I became a rare disease victim. Out of nowhere my swollen, bruised ankle did not heal. I could walk but it was so sensitive and got worse instead of better. Over time the bruises turned bright red and the burning pain and swelling expanded up my calf. I have Complex Regional Pain Syndrome (CRPS).
CRPS typically happens in your wrists or your ankles after a “normal” injury. If it does not heal like it normally would – go see your Dr. and try to remember CRPS. If there is a burning pain and swelling, redness and you are fine in terms of bone, tendon and muscle, you have every reason to suspect CRPS. Your only hope of successful treatment is early intervention (in the first 6 months).
My lower left leg and ankle feel like they are on fire 24/7, 365. It is incurable. I will always have CRPS.
Rare diseases do not have research or medical interest. I feel for everyone who suffers from a rare disease. You tell people what is wrong and they look at you with blank stares, almost disbelieving since they have never heard of it. Why would I make this up? I had a thriving IT career at a BIG 10 university. My plan was to keep going, but over time, the disease wins. The pain is too much to handle in addition to a FT job, let alone a demanding one with no interest in understanding what you are dealing with.
Please write CRPS on the long list of rare diseases and try to find a place for it. It is a high pain disease on the McGill Pain Scale with many people suffering. They estimate 100k to 200k people have CRPS in the US alone. I never thought I would be a rare disease “person”.
Medical promise is one of the great possibilities of our future. We must nurture research and look for treatments and cures for all diseases. BIG DATA can help medicine. Let’s move in a positive direction at US private and public institutions. We can fight to cure heart disease, strokes, Parkinson’s, diabetes AND cancer! And let’s keep looking for ways to extend our successes to the rare diseases that are a daily reality for so many people.
Thank you for reading my CRPS story.