During a recent hospital stay, I was center stage for morning rounds of residents craving knowledge about the “masto lady.” And, so, I began to spread awareness from a hospital bed, where I handed out brochures about a rare disease that can strike both adults and children.
Four years ago,
after nearly a decade of symptoms and suffering that left some physicians scratching their heads,
I was diagnosed with
telangiectasia macularis eruptiva perstans,
a rare form of cutaneous mastocytosis. Not only is my disease rare. It’s difficult to reiterate to the lay medical practitioner, who will admit reading about it in med school but never treating it.
It isn’t an easy diagnosis to make, which is why many patients with mast cell disease can suffer for years.
But Dr. Thomas Selvaggi, M.D., of Hackensack Allergy and Asthma Center, took the time to listen and assemble the puzzle pieces, piercing my symptoms with clinical findings and test results.
I had just begun a rigorous exercise regimen — and was suffering from a midlife crisis, to boot — when my body was suddenly invaded. Itching welts left me crying and tired. When I could, I took naps at work in a quiet room designed for breastfeeding moms.
I felt alone, terrified. What did they mean: There’s no cure? I scoured the Internet and quickly discovered The Mastocytosis Society, Inc. website.
Soon, I was reading through articles and first-person accounts by those living with this extremely rare disease. Now here I am, vice-chair of the association.
Everyone has mast cells in their body; they play an integral role in immunity and in fighting infections. People with mast cell disorders either have too many cells or the mast cells they have do not work properly.
Mast cells can be triggered by external stressors, including the environment, heat and cold, physical or emotional stress, food, friction from clothing or certain medications. They also can fall pre y to releasing histamines, tryptase, heparin and prostaglandins, in an effort to fight a host of symptons.
Mast cell patients can be easily frustrated: You end up with a roller-coast of symptoms, never knowing where you are going to land. Children and adults are affected. Fortunately, the young ones can outgrow the disease.
Those diagnosed in adulthood can suffer many forms. The most life-threatening come in anap hylactic episodes that can keep you from breathing or swallowing — and can put you in an emergency room quick. I carry my trusty epi-pen, which shoots an injectible form of epinephrine should I need to ward off a potential attack.
There is no known cure, and treatment regimens and medications vary.
Sodium cromolyn is an effective mast cell stabilizer, but it’s out of reach for the uninsured — and sometimes even for the insured. Some prescription plans can be finicky and only cover a portion of the cost, or deny coverage entirely. Oddly enough, a few drugs not approved by the FDA are readily available outside the US for a fraction of the cost, without a prescription.
To gain as much control as I could of my disease, I began volunteering my spare time to help The Mastocytosis Society, Inc., known to the community as (TMS), a 16-year-old non-profit organization dedicated to supporting patients affected by mastocytosis and/or mast cell activation disorders, while also helping their families, caregivers, and physicians through research, education, and advocacy.
TMS is fortunate to have a medical advisory board which includes mast-cell specialists from Brigham and Women’s Hospital in Boston, The Mayo Clinic in Rochester, Minnesota, The National Institute of Health (NIH) in Washington, DC, The M.D. Anderson Cancer Center at the University of Texas in Houston and Tufts University, also in Boston. and The Centro de Estudios de Mastocitosis (CLMast) in Toledo, Spain.
Each year TMS offers grants to researchers and scientists studying mast cell disease. This year, $60,000 was awarded to researchers with monies funded from donations and other fundraising efforts. TMS also produced an educational DVD in conjunction with the American Academy of Asthma, Allergy and Immunology. Here’s a clip:
Donations are desperately needed. But so is charity work.
I will be joining Mastocytosis Society Chairman Valerie Slee and the association’s all-volunteer board of directors for the 16th annual conference, “Healing in the Desert” conference Oct. 21-24 in Tucson, AZ. While there, I’ll be posting updates online. The event kicks off with the fourth annual Walk-a-Thon. Everything will be geared toward finding a cure.
NOTE : If you’re interested in helping find a cure, sign up for one of the many walk-a-thons nationwide or donate to the society. Walkers at the marathon can register online; donors can contirbute online; and sponsored participants can have individual walk pages. To learn more, or to make a donation: www.tmsforacure.org . Or contact me at: email@example.com .
Cliffside Park’s Jody Bachiman left the corporate world in her rearview and is now an adjunct professor for Pace University’s M.S. in Publishing Program She also is a major member of The Mastocytosis Society and has maintained an international alliance with other mastocytosis organization in Europe. Last year she spoke at the first international conference on Mastocytosis, in Toledo, Spain.
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