Do you find yourself spending hours trying to attain long flowing locks, perfect glowing skin and toned abs? Well look no further! All you need is a small dose of Systematic Mastecytosis or Mast Cell Activation Disorder.
Two years ago I was lucky enough to find myself in the Emergency Room with what appeared to be anaphylaxic shock. Many epi pens, steroids and doctor visits later it was discovered that I has been chosen to receive an autoimmune disease!
“There are 50 known autoimmune diseases affecting two million Canadians, says Dr. Edward Keystone, director of The Rebecca MacDonald Centre for Arthritis and Autoimmune Diseases at Mt. Sinai Hospital in Toronto. Autoimmunity disproportionately affects women; ratios vary by disease, but overall, almost 80 percent of people with autoimmune disorders are female.”
Okay stay with me, the biology part is almost over. According to Wikipedia, Mast cells are a type of white blood cell that is a part of the immune and neuroimmune systems. “Mast cells play an important protective role as well, being intimately involved in wound healing, angiogenesis, immune tolerance, defense against pathogens, and blood–brain barrier function” However mine like to gather, over-react and trigger a histamine response at any normal allergen.
In between remissions and medication side effects the glorious reality hits of your hair falling out, skin lesions, hives, photosensitivity, chronic fatigue, sore joints/muscles/organs, GI issues, pericarditis, pleurisy and breathing complications. And that’s just my experience! There are many different concoctions and combinations of symptoms. The hardest part for me was the limitations in fitness. Many of the symptoms will flare or prevent strenuous activities which means no more ultimate Frisbee or hard core workouts for me. Get used to your muffin top.
It may sound cheesy, but the hardest part of this disease is physiological. I work so hard to keep my energy levels up when I’m at church or out with friends that they start to believe you’re perfectly okay. They just don’t see you crash after any social event, taking handfuls of medications and covering your body in a heating pad to recover. I get a good laugh out of it when I spend an hour layering my face with makeup to cover the dark circles and pale sickly look, and to blow dry your sparse hair out just right to get the most volume only to be followed by a “you don’t look sick? You look great!” You get paranoid that others think you’re lazy for not having a full time job or volunteering as much as they do. Do people think you’re already on early retirement? Oh, how far from the truth that is!
Vanity? A thing of the past for me. Now I find myself investing time in the relationships with people who you feel comfortable enough to “show” your disease to. People can be pretty great if you let them. They will encourage and surround you with support if only given the chance.
As an added bonus I was treated by a doctor, who practices out of Mcmaster Hospital in Hamilton Ontario, and is exactly like Dr. House, as in grumpy but brilliant TV show Dr.House.
