Being Rare……. Sometimes we look like everyone else, happy, busy people, socializing with friends, and helping others. Then sometimes we don’t. We wear masks to protect ourselves from others scent (strong odors/perfume). Wearing gloves at the playground. Stopping any activity when medicine is needed, or avoiding many activities because the threat is too high. So we look “normal” for the most part, but its what people don’t see that isolates us from most of the world. Lots of medicine daily, and yet still nausea, congestion, pain, and headaches. There is no guarantee from one day to another. Our best defense is avoiding triggers, like chemicals, odors, stress & anxiety, friction, animals, and many foods and additives .Extreme temperatures or just the fluctuation between very hot and very cool (AC) can send him into hypothermia.Â Even with strict avoidance there are the things we didn’t see that can send us to the ER. Always being prepared but always being taken by surprise! When all we do still wasn’t enough and we had, yet another attack. Our version of anaphylaxis,….inconsistent, unusual, and terrifying. A mystery never getting any answers, just thankful it resolves in time and allows us to get back to our usual “normal” life.
My son Morgan is 10 years old, and has lived with Mastocytosis since day one, though it was almost a year before diagnosis.
Our story begins with my healthy-born baby, with clear skin but within the first day developing a spot. The hospital called it a birthmark, but a Mother doesn’t miss a spot on her new baby. He didn’t nurse but we were sent home anyway with a lactation specialist to do home visits. He was unhappy, colic they said and after weeks of screaming I began weekly trips to the pediatrician. I need help, this is not “Normal”. This was my second child so I had a bit to go on. I began to read my child and understand what bothered him. I cut out all allergens from my diet, but wasn’t a baby supposed to have his moms immune system in these first weeks? I cut out most food except whole food. I exclusively nursed him, but I was loosing too much weight. He then tested positive on allergy testing to many foods and more. To our family pets, dog and cat, and carpeting, and basically everything in our house. My search began and became a compulsive determined mothers need for a diagnosis because I knew this wasn’t right. At nine months old a dermatologist photocopied a medical textbook with a half page section on Mastocytosis. “Carry this always” was what I was told. It gave some info on triggers of anaphylaxis but not much else. I carried that until it was worn thin and unreadable. My searches landed me in Boston where a team of doctors photographed my child’s body. His one spot had become many (ten then twenty+). His one raised spot was a mastocytoma, and the others were mastocytosis. He has two of the three forms of this disease which is characterized by an over-accumulation of mast-cells in the body, skin and organ’s. Mast cells are involved in protecting the body’s immune system. The cells release many mediators, like histamine. Having too many of these cells can confuse the body and in our case makes it think its too often in response mode, releasing too many chemicals. He has a very high IGE which is an allergy marker but his allergies are separate of this disease.
My son is an amazing kid who has never known a simple life but has made the world a better place with his positive attitude and charm. He has only asked “why me” a few times in his life, as an honest very literal question, not having any self-pity. His strength is my driving force when it comes to keeping him safe and educating others.
We are so thankful to have support in our Rare community. Thank you to the Running team, NORD, and all the patients who support us. We are blessed.
Nicole, we are blessed to have you, Morgan and Olivia with us again this year!!!
We’re all very excited to be a part of this great organization.
Nicole – great post/story. I’m guessing Morgan got some extra video game practice with all the snow days, but I still want a rematch.
You know Morgan has no mercy when it comes to video games. Hope you’ve been practicing!
This is a great post. Our rare disease normal is different than yours, but it is our normal. We move through our lives and days in our normalcy. I’m a firm believer that there is no global normal. I don’t care to fit in. We’ll always stand out, and Im okay with that.
Imagine a life where we’re all the same?……that’s what I always ask my kids. The ties that bind us do give strength to our “rare” family. Who wants to be normal anyway? Lol