Making a Connection at the 2014 Patient Advocacy Summit: Heather’s Experience
September 23, 2014
By Heather Z.
What an incredible weekend! I am so lucky to have been a part of something greater than myself. While I do not care for my rare disease diagnoses,it was because of them that I was able to attend Global Gene’s 2014 Rare Patient Advocacy Summit.
I met some incredible people, and in turn, these connections make me stronger in my fight against Cowden Syndrome and Lhermitte-duclos Disease. At first I was overwhelmed, but then I realized that this is WHERE I BELONG! I made a few comments to people that “I am just me”, “just have my blog and Twitter” (in comparing myself to these huge organizations and non-profits), but a few people said to me to not sell myself short.
My big take-away (and there were many) was how lucky I was to get diagnosed accurately and quickly. The topic I heard often was “misdiagnosis,” and for me, all it was from my brain surgeries to diagnosis of Cowden Syndrome were just a few months. Due to my neurosurgeon then saying, “I think she has Cowden Syndrome” and a few months later it was confirmed that I did. It’s odd to say I am thankful for two brain tumors, but in my case, it’s what led to my diagnosis.
I think I can safely answer for all patients, that no one likes a rare disease diagnosis, but thanks to Global Genes this Summit fosters connection and support. Thank you!
AND, a big thank you to the Beauty Bus Foundation for taking part in the weekend’s events. I may have teared up a few times when I was getting my make-up done, sitting in the chair made me quite emotional of how far I have come from brain surgeries.
At 39 years of age I was diagnosed with two brain tumors July 18, 2011, and had two surgeries in a week’s time. From then I was diagnosed with Cowden Syndrome (PTEN Hamartoma Tumor Syndrome), and the brain tumors are called gangliocytoma, or Lhermitte-duclos Disease. I write about my experiences with these syndromes on my blog and I tweet often in the #BTSM hashtag on Twitter (Brain Tumor Social Media).
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