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My name is Kathleen and I was diagnosed with Systemic Mastocytosis nearly 18 years ago.  I would like to share with you the details of my diagnosis, my treatment plan and the ongoing management of this rare disease.  Today my Mastocytosis is stable, but that hasn't always been the case.  

Kathleen article

I am 50 years old with a husband and daughter.  I work full-time in a busy HR job, typically 7.5 hours to 10 hours per day, depending on what’s going on. I like to knit, relax and read. I usually knit 2-3 hours per day as I relax watching TV at night. As a family, we like to travel. We’ve been to many places, including Australia, New Zealand, Norway, Iceland, Scotland and different parts of Canada too (just some examples). We don’t travel to places when they are hot as heat/rapid temperature change is a trigger for me. There was one bad incident in Logano, Switzerland …but that’s another story.

In 2001, I was diagnosed with Mastocytosis fairly quickly after my first allergy attack, which I know is quite rare. Within two months of having my daughter, I had an allergy attack. And, then another one where I went unconscious. My doctor referred me to an Immunologist. We tested for some rare conditions, including a tryptase test. My tryptase was high so we started treatment for Systemic Mastocytosis with a variety of drugs, some which left me unable to function well. This was hard with a newborn at home.

The first two years after diagnosis I had many episodes and challenges, especially when I started back to work. I found that getting irritated at work resulted in “attacks” at night that required an ambulance and a trip to the hospital.

Over the years, we have adjusted my medication twice. For about 9 months, I took 10mg of Reactine per day. I started to have attacks so we increased the dosage. Then, I totally messed up my drugs and inadvertently stopped taking Reactine. Within a week or two some serious problems began to arise.

Eventually, we settled on 20 mg of Reactine at night to control the Mastocytosis. I also needed to manage my stress more effectively. I took a 12 week course in meditation for chronic illness. This program helped change my way of thinking – how I thought about Mastocytosis and how I managed stress. I learned that I couldn’t let things bother me like I used to do. This has been a positive outcome for me; I am more calm, relaxed and I focus on keeping my equilibrium.

I have done two bone marrow tests with inconclusive results. Given the effectiveness of the ant-histamines, we are continuing to manage as if I have Systemic Mastocytosis.  I have been stable with my Mastocytosis for the past 10+ years. I don’t think about it very much anymore. I occasionally feel “not right”, but I haven’t had an issue for a very long time.

Recently, things have gotten more complicated as I’ve received a diagnosis of rheumatoid arthritis (RA). I find this particularly challenging because of the constant pain. My husband and I love to go on long walks so the ability to move pain free is important. For a while, I stopped knitting, but my hands still hurt in the morning. With pain either way, I figured I might as well do what I love and what makes me happy. And, I’ve found that I feel better when I keep moving. I am taking immune suppressants with hopes the RA will go into remission. I’m not there yet, but I’m hoping it will happen soon.

My Mastocytosis has been stable through all of this, so I am lucky. I don’t know if my stability will continue as I age. I sure hope so.