Oklahoma Mastocytosis Society - Awareness






SUNDAY September 23, 2001

Not many people have heard of it, but Joyce McEntire of Duncan is intimately familiar with the illness: Mastocytosis.

"It's an orphan disease", she said.  Few people have it.  Only one in 8,000 people are diagnosed with it.  A lot are never diagnosed.

The ailment is related to mast cells, which everyone has.  When they work right, these cells are believed to help in healing wounds, defending tissues from disease and working with the body's immune system, she said.

But for some reason, in some people such as McEntire and fellow sufferers, the mast cells turn against the body.

"Stress, heat and exercise affect people who have Mastocytosis", she said.

Different people are affected in different ways, she said, which makes it difficult to diagnose.

Symptoms can include flushing, palpitations, difficulty breathing, dizziness, headache fatigue, intermittent diarrhea, syncope, itchiness, nausea and/or vomiting, abdominal pain, heartburn, bone and soft tissue pain, irritability, forgetfulness and anaphylaxis, according to the Mastocytosis Society.

My main problems are severe fatigue and bone pain, McEntire said.

She said there are 38 people in Oklahoma who have been diagnosed with the ailment.  There are fewer than 20,000 people known to have it.

She was diagnosed with Mastocytosis in 1996, she said.  There is no cure, but its symptoms can be treated with a variety of medications.

In July 2000, she started an Oklahoma Mastocytosis Support Group, she said.  We have people from all over the state of Oklahoma drive in for our meetings.  We meet every six weeks in Oklahoma City.

She is also vice chairman of the National Mastocytosis Society and also serves as National Mastocytosis Support Chairman.

McEntire said she would be glad to speak with anyone who would like to know more about this ailment.  She can be reached at 580-439-2255 after 6 p.m. workdays, or by email at redbird@texhoma.net.

She expressed gratitude to her employer, Terry Womack at Internet Duncan, for being understanding about her illness. "He makes it easy for me to continue to work on a daily basis," she said.



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