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 (2008)

I like to refer to my diagnosis as a "fluke". I had gone to a regular checkup and was asked if I had ever seen a dermatologist before. The answer was no, and as a woman of Irish decent, with fair-skin and freckles, and a family history of skin cancer, colon cancer, and breast cancer, I figured it was probably time to see a dermatologist so I scheduled an appointment. At the time, age 37, I had already had a base line mammogram and colonoscopy, so skin cancer was the only thing I hadn't necessarily dealt with yet.

At the time, I considered myself in good health. I casually mentioned to the dermatologist that I did, however, notice these unusual "spots" on just the top of my thighs. I am a geek, so I figured it had something to do with my laptop use the last 2-3 years, but the spots didn't hurt at all, so I figured it was nothing to worry about, but while I was there, I might as well point them out. Well, the doctor said all my freckles and moles looked fine, but he wanted to schedule a biopsy of the thigh spots. Well, that caught me a little off guard, but I told myself that I expected him to biopsy at least one of my moles, so I shouldn't worry about it. The following week, the results were not conclusive so he had the lab run more tests and asked me to come back again. Finally after 3-weeks, he explained that I had a disease called mastocytosis and that the next step was to refer me to a hematologist. He told me not to look up the disease on the Internet because it would probably scare me to see what I found. I told him I had to know how to at least spell the disease because my mother is a nurse and she would not be happy if I came home and said I had something but all I remember is it started with "M". As far as the Internet, you can't tell a geek in a PhD program to NOT research something on the Internet. So yes, I did get scared. The little information I could readily find online and the fact that I now has an appointment scheduled with a hematology oncologist--yeah, I was pretty freaked out. Then my mother the nurse, thinking she was doing me a favor by giving me access to a medical article from the hospital, proceeded to send me an article for doctors, and the glaring piece of information was the 6-12 months to live with aggressive mastocytosis or mast cell leukemia. What? How did this happen? How did I go from feeling relatively healthy to having maybe a year to live?

Well, this was not exactly the case, of course. I saw the hematologist who ran additional blood and urine tests, CT-scans, and eventually a bone marrow biopsy. All tests were fine or within acceptable ranges. However, I did have a history of GI problems, so I still started a course of both H1 and H2 blockers. I was being treated as having Cutaneous (urticaria pigmentosa) with borderline Systemic Mastocytosis. Beyond that, it was a "wait and see" prognosis. The hematologist told me that typically people present one way, and they do not progress. Well, that would be good.

Well, that was not exactly the case, of course. That following winter/spring, my husband and I had plans to go to Las Vegas. We had separate flights and it was bad weather (surprise). My flight from Syracuse to Philly, in a small, propeller plane, was the most awful flight I have ever experienced in my life. I was physically ill the entire flight and might have jumped if someone had opened a window for me, it was that bad. Well, I feel a little crazy when I tell people this, but I have not been the same since. After that trip, I felt progressively worse. The spots started appearing in many other places besides just the top of my thighs. My history of GI problems came full-circle and somedays the pain was just unbearable--like nothing I had ever had before.

I spent about the next 8-months, between my local doctors, trying to feel better and nothing was working. My doctors were so kind and they tried, but they just didn't know enough about this disease. So finally, I decided to seek out some experts. By this time I was a member of TMS and was working on the Web site. I scheduled an appointment with two doctors on the TMS medical advisory board (MAD), Greenberger and Castells. One of the main things that came out of that trip to Boston was a more effective treatment plan. It turns out I was taking some of the appropriate medications, but NOT the appropriate dosages for a patient of mast cell disorders. Slowly I started to feel some relief.

I now work more closely with TMS on the board of directors in my attempt to provide others like me with more information about this disease. In addition to volunteering with TMS, I have also been the President of the Student Teacher Parent Association at my son's high school, and Chapter Advisor for the Alpha Chi Omega women's fraternity, Lambda Chapter, at Syracuse University. I am wife and mother of one teenage boy, soon to graduate high school and start college. I enjoy volunteer work because I feel like I am doing something really worthwhile, and typically, it is something that no one else wants to volunteer to do. I have been unemployed and doing some independent consulting since around the time I was diagnosed and my symptoms increased. Volunteering with TMS has given me the opportunity to stay active and I hope to get back to work soon. Volunteering with TMS has also given me the tools to cope with this disease and acknowledge that I can still live a normal, productive life. I'd like to think that I will continue to volunteer with TMS in some way, as long as I am able.

--Erin Cunia (2010)