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Kristin Refuses To Let Cowden Syndrome Rule Her Life


Although the exact prevalence of Cowden syndrome is unknown, researchers estimate that it affects about 1 in 200,000 people.

I am a mom, wife, daughter, granddaughter, sister, aunt, friend, volunteer, fitness instructor, triathlete, marathon runner, Master’s degree recipient, cancer survivor and patient with a rare disease. I have Cowden syndrome, a disease that predisposes me to many different cancers including: thyroid, breast, colon, kidney, endometrial and skin.

I could easily live my life in fear, worrying about what the future holds, but I refuse to let this disease define me.

I will be doing prophylactic mastectomies to significantly reduce my risk of breast cancer down from 85% lifetime. I feel blessed that I have the information about my genetic makeup, so I can make informed decisions and take charge of my healthcare. My hope is that someone will hear my story and know that the human spirit is stronger and greater than any disease or illness.

I want to be an example for my young children, and I want them to see that they can do whatever they set their minds to, that they too will be able to overcome adversity.

Best Wishes to All,

Kristin

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  1. jin youngpark says:

    i am korean . i am cowden syndrme
    rare sick , i read your word
    please cheer up

  2. KRISTIN! Thank you for sharing your story! I too have Cowden’s Syndrome and have connected with a handful of people (via the Internet) with CS. You have given me the motivation to share some of my story as well. If you’d like to connect via Twitter or my blog – I would love to chat with you! (I was diagnosed last Fall after I was diagnosed with the brain tumor gangliocytoma – which is Lhermitte-Duclos Disease).

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