If I Had Known Back Then Who I Know Now: Not So Rare After All

When I was told Cowden Syndrome affects 1 in 200,000 people, my world fell apart. I am the ONE person in over TWO HUNDRED THOUSAND?! I couldn’t fathom the magnitude of those numbers. But if I would have known 3 1/2 years ago that the internet would open me up to connecting with others who have CS, it would have given me so much hope then!

I have both a Twitter and Instagram account and part of my advocacy efforts is to hashtag my medical pictures and tweets with #CowdenSyndrome (A little side note: it’s unclear exactly what this syndrome is called and some people call it COWDEN’S Syndrome, COWDEN Syndrome, COWDEN Disease, so when choosing hashtags to try to connect with others it can be quite overwhelming at times!) To help overcome this, I would use a variety of hashtags to try to cover all bases. And since doing this on a few social media accounts I have virtually connected with 17 people living with Cowden Syndrome!

One of these people I connected with IS on Instagram, and over a few months we were commenting back and forth on each others pictures. For some reason we exchanged phone numbers and when she provided hers I saw it was the SAME AREA CODE AS MINE! I am about fell off my bed. True story! I texted her within 10 seconds and come to find out she lived 5 cities away from me! She has since moved a bit further away but we can still meet by each driving about 30 minutes or so each way and meeting at a location in the middle.

I gave her a denim ribbon for her car window, and invited her to the Patient Summit (and GALA!) this coming year. No matter how you feel about social media, when used for good it can have AMAZING results. (When I showed a few people this picture they said we look like sisters. And, in fact. She said we look like sisters. It was amazing to speak with another person who truly gets how overwhelming Cowden Syndrome is. We have had similar issues with this syndrome and I’m thankful and blessed to have found a person so close who understand life with Cowden Syndrome like no one else. Thank you Internet!)


About Heather | hopeforheather.wordpress.com

I was diagnosed with a 5 cm. brain tumor in July 2011. That diagnosis of Lhermitte-duclos Disease then led to the diagnosis of Cowden Syndrome, which is a PTEN mutation that affects 1/200,000 people. I volunteer at a local elementary school, an animal shelter, I am a Literacy Tutor, and when life allows I work part time as a Substitute Teacher. I am an Auntie to the best two boys in the entire world, and I hope to start a PTEN tweetchat on Twitter in the near future

Filed Under: Guest Bloggers, Insights, Patient Stories


Global Genes Comments

  1. Connie Haven says:

    I am almost 100% certain I ha e Cowden’s syndrome. I have to wait a month for a GYN, to test for endo cancer. Current, sudden onset of pain, bleeding, 3 ovarian cysts this month, after menopause. Ovarian cysyts, past breast biopsy, cervical niopsy, developed skin tags, and ovarian and finger cyst removals, mother’s history, my current, untreated hypothyroidism and I have 3 thyroid cysts. I am scared to death and was dropped through the cracks over the yrs, seeing Dr after Dr, asking why my body is producing cysts. I am at a high risk now for cancer. Maternal a. Maternal aunt also survived breast cancer 2 times. I don’t know how to tweet. Have facebook, email, phone. Advocating for myself has been exhausting. Please help with advice and support.


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