Tuesday, May 19, 2009

Moving Abroad for Treatment of Genetic Illness

Several years ago, a reporter told my story in the WSJ (http://online.wsj.com/article/SB119515792495794643.html) about how my husband was fired (and later rehired when I was now pre-existing) when I started showing signs of a genetic autosomal dominant disease. We have a self-funded health plan through his employer. My husband was a die hard believer that the USA is best in everything, esp. health care, since his father was a doctor until he died in the early 1990's. When we lost our care, and I started going downhill fast, I suggested we go to Belgium and see what kind of care I can get there. I must add that I was previously married to a Belgian, lived there for a while and became a citizen. We went, talked to the leading geneticist in the world for the disease, and got a game plan for treatment--all for free. My husband cried. We are now trying to sell the house here in CO before I die. I am already becoming very ill, but we need the cash from our home in order to move. I was featured on a Flemish TV show as an example of how health care is issued in the USA. Also, I corresponded with several high school students in Belgium about how poor the US system is, even for those who have insurance when they get ill. I write to Obama, Max Baucus, etc., daily because this madness has to stop.

Please pray that our home sells so we can move. My Ehlers Danlos syndrome is getting worse. I can hardly walk. I was able to qualify for a free colonoscopy (when my husband lost his job. We had to pay the medical bills our insurance reneged on, we were close to being destitute and lived on my husbands unemployment and what aluminum cans my then 11 year old could pick up). The doctor doing the colonoscopy said he did not believe in Ehlers Danlso-he said it was what people who bend a lot think they have. After the colonoscopy he thought I belonged in a hospital because my colon tissue was so fragile he wondered how it still held up, and because my colon had no structure and was falling apart. He asked me never to come back to him because it took him 3x as long to do the procedure since he had to be so careful and go so slowly. He said, I don't know what is wrong with you, but is is not good.
Can't wait to sell the house and move.

Thanks for all you do for the movement of HR 676.
Barbara Calder, dying in Colorado Springs, CO

1 comment:

Anonymous said...

Incredible story and great article at the Wall Street Journal.

I wish you the best. I call my reps all the time urging them to support HR676 (and Bernie Sanders' bill in the Senate).