Rare Disease Day: Heather and Mesothelioma

Today I'm also profiling someone else with a rare disease. After this you won't know about every rare disease but you'll know about at least three. (Maybe read Part 1 and 2 of this 'series' first). I first found out about 'Rare Disease Day' through Cameron whose wife was diagnosed with mesothelioma in 2005.

Mesothelioma is a rare cancer that occurs in mesothelioma of the body (the thin layer of cells lining the body's internal organs). Around 80% of the cases can be attributed to asbestos with about 3000 people in the USA are diagnosed with mesothelioma a year. Even though asbestos is banned in many countries, somehow it's not banned in the US or Canada (I thought it was, because it should be) because we know it causes cancer. And not in the way that 'eating bacon may cause cancer' (don't feel bad about eating bacon). Part of the problem around diagnosis is that the cancer can be dormant for 20-40 years after exposure to asbestos. Those diagnosed with mesothelioma have a poor prognosis overall with most people having a life expectancy upon diagnosis of 1-2 years. However, the more research and treatments into this rare cancer, the better the survival rates become.

Two excerpt's from Heather's Story:

"A cancer diagnosis throws you into an unknown world. In this world, emotions roll over you like big ocean waves. What the future holds, the future you thought you had so carefully planned out, all of a sudden changes with 3 words: “You have Cancer.” People are quick to give advice, or tell you how they know a person who knows a person who died from your kind of cancer. They mean well, but don’t quite know what to say because suddenly, looking at you and seeing themselves, they are faced with their own mortality. The feeling of loss is hard to explain, but it’s perhaps one of our most universal experiences as humans.

Without treatment, I wouldn’t live past 15 months. In November of 2005 my doctor said I had malignant pleural mesothelioma. He said “cancer,” but all I heard was that I might not be able to raise my three month old daughter, and my husband might become a widower after just six and a half years of marriage. I learned that my father, a man who worked in drywall construction, had unknowingly exposed his own little girl to asbestos through his work jacket. Treatment options were limited and there was no guarantee. Today, I’ve outlived my original prognosis and continue to raise awareness of this terrible disease."

Read all of Heather's powerful story here. More about Mesothelioma Cancers here.