I’m Lisa Klimas, the author and founder of MastAttack. I am 33 years old, live in Boston, and have a slew of diagnoses, including the rare disease, systemic mastocytosis. I have bright red hair, wear glasses, listen to punk and alternative rock, and enjoy long walks with my dog, yoga, watching documentaries, and writing.
I started getting sick enough to want a diagnosis in 2007. I was diagnosed over four years later in 2012. My baseline health state fluctuates a lot. I have weeks when I feel really good and others when I am bedridden and unable to perform basic daily living tasks without assistance. I live alone with my dog, Astoria, but I have family and friends very close by. My support system is wonderful and has allowed me to remain pretty independent.
I am fortunate to have lived a life that prepared me well for the experience of living with mast cell disease. I am a scientist by profession. I have an undergraduate degree in Biological Sciences and a graduate degree in Biology with a research concentration in Microbiology. I started developing tests for infectious bacteria and yeasts while I was in school. After graduation, I continued to work developing diagnostics for various infectious organisms, including methicillin resistant Staph aureus (MRSA), vancomycin resistant enterococci (VRE), gram negative rods like E. coli, Klebsiella spp., and Pseudomonas aeruginosa. Data on these tests are published in peer reviewed literature and have been presented at a number of conferences. Some of these tests are FDA approved and CE marked for use currently.
Developing diagnostics today often involves a lot of work with molecular biology. I have developed tests that use fluorescent in situ hybridization (FISH), PCR, sequencing, and immunohistochemistry (IHC), among other techniques. In 2013, I left Infectious Diseases to develop diagnostics for oncology and rare diseases. I currently identify biomarkers that will help us to know which treatment is most effective for patients in clinical trials so that they can get the right treatment faster. I love my job and they have been amazing about my health. In a very strange stroke of luck, my department is involved in clinical trials for treatments for various forms of systemic mastocytosis. My department also developed diagnostics for patients in those trials.
I have worked other jobs that also afford me a lot of insights into mast cell disease and medicine in general. I worked full time to put myself through school. My first job in health care was working as an assistant to an 87 year old doctor in Cambridge. He was difficult to work for but I learned a ton about diagnosing and treating lots of conditions. He was also a great role model in another way – he strongly advocated continuing to work to keep his mind sharp. I stopped working for him when he died at home at the age of 89, mind fully intact. He was expected in the office the following day to see a full schedule of patients.
I put myself through school largely by working as a pharmacy technician. I spent 50 hours a week knee deep in the mess that is the American health care establishment. I constantly dealt with insurance rejections and prior authorizations. I worked with providers and patients to try and find a solution that patients could pay for. I did a fair amount of compounding.
When I was diagnosed in 2012, I was relieved to have a diagnosis. Treatment helped immensely but as time went on, my health grew worse. At that time, I was unable to find much information on treatment, prognosis, and risks for mast cell patients. It was scary. I really wanted someone to explain all of this to me in a comprehensive way and to reassure me that I could survive this and still have a good life. When I couldn’t find someone to do that, I decided to become that person. In the years that followed, I became a subject matter expert on mast cell diseases.
In February 2014, I started sharing a daily fact about mast cell disease on Facebook for Rare Disease month. After seeing the interest from other patients, I started this blog in 2014. By that point, I was regularly answering patient questions by the thousands. In the beginning, the posts were very short, uncited, and were designed for people with no in depth understanding of biology. As time went on, the blog became a lot more popular and the questions I was being asked were a lot more technical. I changed the format of posts and now cite all sources either in text or at the bottom of the post.
MastAttack now has hundreds of followers. I get dozens of emails a day, often over a hundred. I have been fortunate to be able to share my knowledge about mast cell disease with patients, caregivers and providers.
I am making a lot of changes to the site in the coming months in order to accommodate the need for this information on such a large scale. There will be some new things for both people with only cursory knowledge of biology and mast cell disease. There will also be new features presenting advanced and detailed information specifically for people who want to learn the science of mast cell disease (and related conditions) in depth. So stay tuned!
As part of redoing the site, I am open to answering questions about myself. If you have any specific questions about me, please feel free to contact me through the site or to comment on my Facebook page.
Thanks for reading and especially for your patience while I work out new ways to accommodate timely responses to all questions from patients and providers.
Hope everyone has a boring and reaction free night!