With a disease that is rare and not in the spotlight of our mainstream medical world, our strongest ally is one another. By using current and developing technology, by telling the stories of one another, by finding out what works and what doesn’t, we can hope to find a diagnosis, treatment and ultimately a cure.
My name is Taylor, otherwise known as Super T. In July 2015, July 7th to be exact, I was given the last puzzle piece. Finally answering the many years of traveling through the medical world with unexplained symptoms that simply were putting my body through a battle each and every day. After many years, I was diagnosed with a rare disease known as Mast Cell Activation Disease, or Mast Cell Activation Disorder. MCAD, in my case, produces the correct amount of cells overall, but the cells within my body believe anything my body comes in contact with I am allergic to. For those who do not suffer from a rare condition, appreciate what you can do and have.
Before receiving this rare diagnosis, I was big into sports, school, and just living your “normal’ teen life. School, I had great grades, was a varsity soccer player, ran track and was involved with what I had time to. Soccer was my obsession (to put it lightly); besides volunteering as much as I could. When I wasn’t playing I could be found helping out within our church in ministries helping lift children spirits in the hospital, along with serving in the food pantry. If I wasn’t there, then I could be easily spotted training for soccer/at a practice for one of the teams I was on or coaching younger girls in soccer. If you haven’t realized by now, soccer was my life. In general; sports, learning new soccer skills, spending time with friends/family, and making a difference in my community is what pushed me daily.
Once I had the diagnosis of Mast Cell Activation Disorder as an explanation and under the belt, life quickly changed. I went from an avid athlete, being involved, etc. to someone who was about to quickly lose a lot in my perception; but would gain as well. I went from working out 3-5 times a week to stay in shape, to a girl now requiring tubes to keep her alive. Someone who had to be given CPR by a police officer and their mom during an anaphylaxis reaction in 2015 after being unresponsive for 4 minutes. I currently have two central lines, but within the last 2 years have had 4 different lines (a single and double line Hickman Catheter going to my heart, a feeding tube that goes into my stomach and intestines, and then a PICC Line for a few days in my arm). These lines are how I receive medications daily, as well as in emergencies to help control the mast cells in my body.
As far as losing and gaining, we all lose and gain things in life. Particularly for me and my circumstances, I lost/struggle with my outward appearance
because I am so swollen due to medications and the disease itself. Even though I go right to my outward appearance, I have had to look at the good, how I have been able to make new friends with those suffering with the same conditions as me. More importantly, I have learned about myself and if I wasn’t placed in these circumstances I believe I would never have learned these skills. I am taking on the mission of Super T, forming my foundation, and going to make a difference in the medical, most importantly, Mast Cell Disease world.
Who is with me?
– Taylor Nearon