2008.02.29 – myeloproliferative disease support group

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http://www.journaltimes.com/articles/2008/02/29/local_news/doc47c8c5438978d894926008.txt

Upbeat outlook on life
Group supports, informs those with rare disorders

BY PAUL SLOTH
Journal Times
Friday, February 29, 2008 9:02 PM CST

RACINE — When doctors diagnosed Marge Blocks with a rare blood disorder, the outlook wasn’t good.

Or so she thought.

In 1993, while still teaching at Gateway Technical College, she learned she had essential thrombocytosis.

Blocks, a retired nursing instructor, had at her fingertips all the medical information she thought she’d ever need.

The information she found about the disorder was about 20 years old and not very helpful.

“There was this old information that said I would be dead in five years. It was just grim,” Blocks said.

Thirteen years later, Blocks started a local support group, after the Internet made information easier to find. There was more current research about disorders like hers and the outlook for people like Blocks had improved.

The support group might be one of the smallest in the area, but no doubt has one of the longest names.

When Blocks started the Myeloproliferative Disease Support Group, she thought it might just be her and another woman — the only other person she’d found in Racine who had one of the disorders — sipping coffee and eating kringle at the First Reformed Church.

She’d started thinking about starting a local group after joining an online support group. Ten people attended that first meeting, coming from places such as Milwaukee, Merton and Richmond, Ill. The support group meets four times each year.

The group next meets at 1:30 p.m. Sunday at the First Reformed Church, 7110 Old Spring St., across from Roma Lodge.

Myeloproliferative disorders is the general term for a closely related group of progressive blood cancers like the one with which Blocks was diagnosed.

There are three basic disorders — polycythemia vera, essential thrombocytosis (also called essential thrombocythemia) and primary myelofibrosis.

The bone marrow cells that produce the body’s blood cells develop and function abnormally in people diagnosed with one or more of the disorders.

Blocks, 67, had been having symptoms, what she described as mini-strokes, before she was diagnosed.

She learned that her body produced about three times the amount of platelets it should have been producing, which caused blood clotting.

Blocks recalls how difficult it was to find information when she was first diagnosed. Her group serves as a social outlet for people with the disorder, but Blocks looks at her role as the group’s leader as a way to share the information she finds.

During Sunday’s meeting, a researcher from Johns Hopkins University in Baltimore will discuss, by conference call, current research into the disorders.

The advent of the Internet has made all the difference, Blocks said. But she understands that not everyone uses a computer to find information.

The group shares tips on how to live with the disease and cope with side effects. The support group has stayed about the same size since Blocks started it in September 2006.

“It was quite a surprise that there was that much interest. I’ve met such interesting people,” Blocks said. “There is one lady in our group who has had the disease for 30 years. She likes to come just to tell people not to give in to it.”

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