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Medical Coverage Needed for Rare Condition in Ontario

Medical Coverage Needed for Rare Condition in Ontario
I was 8 years old when I had my first knee dislocation. The pain feels like you’ve broken a bone. It’s scary and because things look relatively normal afterwards, and it’s hard to tell what’s going on. I was misdiagnosed by doctors for almost 20 years before I was finally able to see a genetics specialist who confirmed that I had Ehlers-Danlos Syndrome. Ehlers-Danlos is a rare genetic disorder that affects around 1 in 5000 people. Symptoms range from those with mild hypermobility to those with severe pain and instability. Some forms of EDS affect veins and arteries and can lead to sudden death. 

In the past 30 years, I’ve had hundreds of dislocations (ankles, knees, toes, fingers, shoulder, hips and other joints) and countless other medical problems. I’ve also struggled throughout the years with doctors that have never seen anyone else with Ehlers-Danlos Syndrome, insurance companies who don’t want to pay for my expenses, and the outside world who thinks that I look “normal” and can’t possibly have something wrong with me.

Brooklyn Mills of Oakville, Ontario is experiencing some of those same frustrations. She also has Ehlers-Danlos Syndrome, but has been unable to find doctors with the experience to treat her where she lives. Some of the best Ehlers-Danlos specialists are here in the U.S. and have treated hundreds of Ehlers-Danlos patients and know what works. But, officials at the Ontario Health Insurance Program have ruled that they won’t pay for Brooklyn to receive the out-of-country care she deserves.

The Mills family has already incurred hundreds of thousands of medical bills over the past two years since Brooklyn first starting having symptoms. She recently had a series of surgeries that greatly improved her quality of life, but officials in Ontario have not agreed to reimburse the family for those expenses. Ehlers-Danlos is a chronic, debilitating disease. There’s no quick fix and Ontario needs to recognize the long-term coverage Brooklyn is going to require.

Please sign the petition to convince Ontario Health Minister Deb Matthews to cover Brooklyn’s out of country expenses and get her and others the coverage they need.

Since the petition was created and posted on various social networks, I’ve heard from several people in the Ontario area who are facing similar issues getting coverage for Ehlers-Danlos related medical issues.

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303 comments

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4:10AM PST on Nov 14, 2011

We will keep our thumbs crossed and pray that this brave lassie recovers soon....

7:08AM PST on Nov 13, 2011

I have EDS too (although no where near as badly as you do). Keep fighting! You are in our thoughts and prayers!

1:32AM PST on Nov 11, 2011

We are praying for you. Love

12:23PM PST on Nov 10, 2011

Best wishes

11:29AM PST on Nov 10, 2011

Signed.

Reading stories like this maked me wish all og us doctors were superhuman, so that we could take away our patients' pain and suffering and make each and every one of then as good as new.

11:20AM PST on Nov 9, 2011

thnx

2:26AM PST on Nov 8, 2011

signed

10:19AM PST on Nov 7, 2011

signed and thx

8:02AM PST on Nov 7, 2011

signed and thanks for bringing this story to lite. Hopefully the goverment will do their part and help the Mills family out.

2:49PM PDT on Nov 5, 2011

There are a case in Sweden now with a child with the same disease. After it had been covered in national media, the family will now be helped by the regional hospital administration to go to the US and have their child treated on taxmoney.

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