Erin

Patient Leader

Location

Mercer Island, WA

Nominations

Best in Show: Facebook Best Kept Secret Health Activist Hero

Erin is one of only a few facing three kind of tumors/cancers. First diagnosed at age 16 she has been and is still fighting for her own health. Nevertheless she is involved in so many ways in advocating and spreading awareness, both in closed groups as well as in the more visible world  — Vincent

Erin was diagnosed in her teens with Carney Triad, and she is only one of thirty five people in the world today. Carney Triad is an extremely rare syndrome that involves three very rare tumors: Pediatric/Wild Type Gastrointestinal Stromal Tumors (GIST), Pulmonary Chondromas, and Functioning Paragangliomas (also known as extra-adrenal Pheochromocytomas.) To-date, only 140 or so people have been diagnosed with Carney Triad. Of those 140, 35 at most have ever acquired all three types of tumors within their lifespan. Erin is a patient advocate and is actively involved in many forums, facebook support groups and is also the Editor-In-Chief of Pheo ParaTroopers Newsletter. She also participates in symposiums to create awareness of her condition as well as other rare diseases.  — Jackie

Not only does she have a huge list of her own health problems that she must deal with on a daily basis, but she is amazing at raising awareness of the rare disease she has, and informing those who wish to gain information on the condition. She supports over 100 people and gives the same amount of love to each individual, without needing/wanting the credit that she so definitely deserves.  — Taye

Erin started a support group for people with pheochromocytoma and paraganglioma, and keeps it going, she volunteers for the Pheo-ParaTroopers organization and recently added a blog on cancer to her outreach.  — Danielle

Erin

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