Woman raising awareness of misunderstood disease

A Mountain View County woman is raising awareness about a disease that many people in Canada do not recognize.

Melany Sealy recently came before Olds council hoping to raise awareness about sarcoidosis, an inflammatory disease that can attack almost any organ in the body. Because of its elusive nature, it can be diagnosed as anything from a heart condition to nervous system disorders and eye problems. The disease causes heightened immunity, which then attacks the body's own organs.

Sealy was in front of council requesting that council proclaim April as Sarcoidosis Awarenesss Month in Olds.

It took Sealy a year and a half to get a proper diagnosis. She was finally diagnosed through a lung biopsy in which lymph nodes around her heart were also removed. She has had everything from kidney stones, eye problems, heart and gastrointestinal issues to nervous system issues. Sealy is still undergoing various tests on a weekly basis to find out the best course of treatment.

Sealy said a lot of the struggle she has ñ and believes others have ñ could be eliminated if more was known about the disease in Canada. Sealy recently started the National Sarcoidosis Organization, the only one of its kind in Canada, because of the dearth of information among the medical community and public about the disease. She said very few medical professionals in Canada can recognize the symptoms, in part because it mimics so many other disorders.

"I'm still undergoing tests, at least one to two tests a week. I have numerous specialists that are testing and trying to find out Ö what to do. A lot of that struggle could be eliminated if we had the proper systems and information in place in Canada,î she said, noting that the United States has clinics with specialists that focus on the condition.

In researching the disease, Sealy said there are more than 135,000 Canadians living with sarcoidosis.

In order to address the lack of information about the disease, Sealy has started a website for the National Sarcoidosis Organization, with which she hopes to disseminate information and fund research. The website is available at www.nationalsarcoidosisorganization-ca.webs.com.

"I'm going to donate all our funds Ö to research on sarcoidosis and provide information for patients,î she said.

Sealy will also be running the Quarters of Care initiative throughout Alberta from Feb. 1 to 15. The initiative is to raise awareness of the disease and provide information to councils throughout the province. The town that raises the most funds for the disease will be presented with a plaque and be featured on the National Sarcoidosis Organization's website.

Sealy said her commitment to raising awareness comes from a frustration of the lack of knowledge about the disease in Canada. Through her efforts, Sealy hopes to change that for the many people who suffer from the disease.

"I want to bring more resources available to (doctors) and more information to them about this disease, as well as everybody who's suffering, I want to provide support to them, because I've had to get all my support out of the States. It's a very debilitating and frustrating disease, î she said.

Sealy has written to all municipalities in Alberta, with six municipalities so far proclaiming Sarcoidosis Month. She said all the Canadian premiers were contacted, as well as Prime Minister Stephen Harper and federal Health Minister Leona Aglukkaq, about proclaiming Sarcoidosis Awareness Month for April.

While Olds council simply received the presentation for information, Mayor Judy Dahl said she was impressed with it and looks forward to receiving more information about the proclamation request. Dahl has direct knowledge of the disease, as a family member was diagnosed with it in 2005.

"It is truly a hidden disease that is affecting a lot of Albertans. I know that it has affected my family directly Ö and the signs were definitely difficult to diagnose. When you're dealing with signs that are difficult to detect in Ö health and wellness, awareness is key,î she said.