The Mastocytosis Society, Inc. (TMS) was founded in 1995 by Bill Abbottsmith, Linda Buchheit, Olive Clayson, Iris Dissinger, Bill Hingst, and Joe Palk. Back then, very little was known about Mastocytosis, and so these pioneering individuals sought to fill a massive void — to find some answers to their multitude of questions about this rare disease. They found one another through sheer determination and extensive research.

The first support group meeting was held in Baltimore at the Inner Harbor in 1994. Those in attendance were Linda Buchheit and Bill Hingst. The second meeting was held at Linda Buchheit’s home in Ohio the following year. Twice the number of Mastocytosis patients attended. Little did they know how fruitful their efforts would be and what a lifeline they would become!

Many patients who were diagnosed with Mastocytosis in the 1970s, 1980s, and early 1990s were given a very grim prognosis. Up until that time, Mastocytosis was not often considered when physicians were making a differential diagnosis, and many cases were completely missed until the patient died. At that point, signs of the disease were then discovered on autopsy; however, because so little was known about Mastocytosis, it was presumed that Mastocytosis was one of the causes of death, when in fact, often the patient had died of other causes, and the Mastocytosis was an incidental finding! On the other hand, more advanced cases of aggressive Mastocytosis were also recognized during post-mortem exams, leading pathologists to identify all Mastocytosis as having a high mortality rate associated with it. Fortunately, that prognosis has improved as more patients are diagnosed and treated sooner, and more physicians research and treat this disease.

I am a TMS member and current Vice Chair of TMS, and I was diagnosed seemingly by accident in 1987 when a group of gastroenterologists observed me flushing during an exam. After years of evaluating my chronic nausea and diarrhea, weight loss, esophagitis, strange red/brown hives on my arms (which turned out to be urticaria pigmentosa), headaches, bone pain, and relentless itching, they finally made the connection between the flushing and mast cell disease. I was sent home to do the first of many 24-hour urine collections to assess histamine levels and 5-HIAA, and I was given a reference to a five-year-old journal article that essentially gave an average two-year prognosis from time of appearance of first symptoms to death from the disease.

I, like many of the other patients suffering and newly diagnosed with Mastocytosis, was devastated. The more I read — and the articles were few and far between — the worse the outcome seemed. However, after starting the basic Mast Cell Disease medication protocol, I began to slowly stabilize and that first year turned into a second, and then a third, and low and behold, I was still alive! I was treated by several caring and well-read physicians who began to assure me that I must have the newly described indolent form of the disease, which carried with it a more normal life expectancy.

In 1997, I flew from my home in Pennsylvania to Boston, Massachusetts, to see a famous Mastocytosis specialist, Dr. Richard Horan. I was immediately at ease with a physician who was so very reassuring and familiar with Mastocytosis and Mast Cell Diseases. The most important thing I heard him say that day was that if I stayed in the indolent stage, stayed on my meds, and avoided triggers, I could possibly expect a near-normal life expectancy! That was assuming, of course, that I did not push it by taking any remote trips to the Australian outback, as a diagnosis of Mast Cell Disease requires ready access to emergency treatment. Since then, my prognosis has become more variable, as it is not certain which form of mast cell disease I have.

I now work as our TMS Vice Chair, I am a wife and mother of three young adult children, and I work three jobs as a pediatric triage nurse. I continue to require strict adherence to my medication protocol and avoidance of triggers.

Thanks, in part, to the help and support I have received from TMS, I continue to lead a full and rewarding life while adapting to the challenges of mast cell disease.

--Valerie Slee