My wife's raising awareness - All year!

By André, Complex regional pain syndrome, Canada, March 1, 2018

One of the ways she shares her rare

My wife broke her arm almost 2 years ago. She slipped on ice and fell. The broken ends of the bone were sticking out the top and bottom of her wrist, but didn’t break through her skin. She’s a strong, tough woman, who used to be an officer in the Royal Canadian Air Force reserve. She taught First Aid for emergency situations in the military, so could see that the bone was broken.

We live near a hospital, so she drove herself home - with a broken arm! And stopped at a café on the way, to buy me a coffee. She worked at a hospital a few years ago (in biomedical ethics or bioethics) so knows that hospital coffee’s not very good.

The doctor at the hospital was great. She even put the cast on my wife’s arm herself. A few days later, my wife said the pain was getting worse. Her fingers were swollen, getting very stiff. She told me it felt like someone was holding a flame to her fingertips.

It was hard to see her in such pain, and not be able to help. She had a follow-up appointment at the hospital a couple of weeks later, so decided to wait - instead of going back to the hospital right away. But the new doctor there told her nothing was wrong, that the symptoms were because of swelling – so she should soak her fingers in ice water. She did that, but it made the pain worse!

It took 3 months and many more hospital visits to get a diagnosis. She was diagnosed with CRPS/RSD by a specialist at 1115 on a Friday morning. At 1215 that day, she had a dangerous procedure in the day-surgery operating room. She had 6 day-surgery procedures in a 2-week timeframe. We were scared.

She’s had 19 day-surgery procedures now, physiotherapy up to 2 hours a day, and wears a painful finger & wrist brace several hours each day. And her doctors - at 2 hospitals - have tried a lot of different medications.

The first thing she wanted to do, once she found out she had a rare disease, was to try to help other patients. She was already blogging about bioethics and patient privacy, so started blogging about her rare disease in May 2016. Since then, she’s been blogging mostly about CRPS/RSD, to raise awareness and help patients feel less alone.

She helps patients in other countries find resources, and to better understand the disease. Because she used to work in a hospital with international collaborations, she has a good idea of what patients might expect.

She already helped 2 people get diagnosed in their own countries, by sending them articles written by physicians and researchers - that these patients could show to their own doctors. Last week she put an image from Rare Disease Day 2018 on her blog, for everyone to see. These are just some of the ways my wife does #ShareYourRare, all year long!

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