I am a 43 year old woman with Relapsing Polychondritis. 1 in 3.5 Million people are diagnosed with this disease. My favorite saying is, “I couldn’t just win the lottery??” I was diagnosed by my allergist who recognized my swollen ears, a hallmark of this disease. Some day it will probably kill me, but, as they say, ‘no one gets out alive’, it’s what you do with what you have that matters!
In the important parts of my life, I am a mom of two adult sons, a wife of 20 years, and have two dogs and two cats. My submitted picture is of my service dog, Dante. I am currently losing my hair due to the disease and medications, and he has a cheery smile.
I teach children with special needs at the Leavenworth School District here in Kansas, and return to Michigan to my home. There were no jobs in Michigan so I came to Kansas to teach. My school family is wonderful and makes both living far from home and with this disease much easier. I have a long- worked for Ph.D. in Autism, communication, and special education, which I earned May 2011. RP was NOT going to take that away!
While I am a “survivor” with this rare, serious, difficult disease, I refuse to be defined by it. As February 29th comes, we will be “Leaping for Rare Diseases” to raise funds for NORD, in a jump-rope-a-thon at the middle school where I teach. I can’t jump but will be organizing and supervising. I am hoping for research that discovers what causes, and cures, the rare illnesses all of us face. My students, who live with Autism and varying other disabilities, will be jumping too!
For anyone who has this, or other rare diseases, we must continue to do all we can to make these “rare” diseases “cured” and eliminated. Once they believed chicken pox, rubella, measles, and many other illnesses could not be conquered. Once we understood them, we were able to practically eliminate them. This is my goal for our children’s future- that what is untreatable now will be unknown in the future.