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.

June Cotter
Kansas

9 thoughts on “Relapsing Polychondritis – My Chances of Winning The Lottery Are Better”

  1. Chris Hempel says:

    You are an inspiration June! I have not heard of Polychondritis until today — thanks for sharing!

  2. Madeleine says:

    I’m a 22 year old Australian female with RP and it terrifies me!
    Reading your story gave me comfort in knowing the few others out there who are going through this are just as passionate about finding a cure/cause.

    Thank you and God bless xo

  3. Pat Kirby says:

    Thanks June to being a foot forward for RP as I always call it “the nastiest disease that you never heard of.” Orphan diseases often are the in the we just don’t know the causes of it category but to some of us that presents challenges to push us forward to make them in the category..people use to get that but they don’t anymore..and that’s where RP needs to be.
    If not controlled RP can lead to being deaf, dumb, blind, disfigured and in horrific pain if critical organ failure doesn’t occur first. Thought to be an autoimmune disease the body attacks its own cartilage.

  4. Hugh Hempel says:

    Thank you Pat for reminding us about the importance of raising awareness for Orphan and Rare Diseases!

  5. Carol Giordano says:

    THANK YOU JUNE FOR YOUR STORY, AND HELPING TO BRING MORE AWARENESS OF OUR DEVISTATING INCURABLE DISEASE!

  6. Lisa.HypoGal says:

    Thank your voice on RP. Unfortunately, I also have this disease and the need to raise awareness is so important. I believe that RP is connected to my other rate chronic disease, Sheehan’s Symdrome.

  7. Connie says:

    Thank you. You give me a sensee of hope and encouragement. My son is autistic and I have recently been diagnosed with RP. I am scared. Your simple words have been noticed. Thanks

  8. Yvonne Wilson says:

    Thank you for your post. Would anyone care to share the symptoms they had when diagnosed? I’ve been doing back and forth to multiple doctors and have yet to been diagnosed. When I typed my symptoms online this what came up. I’m just looking for help please?

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