Worldwide, there are between 5,000 to 7,000 rare diseases in existence. For those living with a rare disease finding access to proper care or an appropriate network of support can pose a significant challenge. Today there are many different organizations and personal advocates working towards increasing awareness of rare disease. For Alyssa Zeigler, a senior at Western Washington University (WWU) and rare disease advocate, 21; the challenging experience of living with Gardner Syndrome has provided her with the wherewithal to inspire others living with a rare disease.
When Alyssa Zeigler was 14, she was diagnosed with Gardner Syndrome; although life altering, the diagnosis did not come as a surprise. “I had a gut feeling that I had the disease. Growing up, I was very familiar with familial adenomatous polyposis (FAP). I never got to meet my grandmother – she passed away from cancer caused by FAP at the age of 29. My dad and three of his siblings also have either FAP or Gardner’s.” With a strong family history of Gardner’s and FAP, Alyssa knew there was a strong probability that she too had the disease. Upon diagnosis Alyssa was left with the difficult decision of having her colon removed as a preventative measure against colon cancer. Determine to live as full and active of a life as possible, she made the decision to forgo surgery and instead has an annual colonoscopy, takes non-steroidal anti-inflammatory medication (NSAID), and maintains a high fiber diet. In the seven plus years since her diagnosis Alyssa has gone from having 30 polyps a year to approximately three per year. Even though she hasn’t developed cancer, she still has had to deal with a number of other problems, such as four surgeries on her face for skin cysts and an osteoma (bone tumor).
Despite, the challenges Alyssa has faced she sees remission as a second chance; “I know that my life will change if I have to have my colon removed. But I have been given this chance and hope that my experiences will help towards a cure. As each year of remission passes, I appreciate it even more. My goal was to graduate from high school without needing surgery and in March I will be graduating from college.” Along with being a senior at WWU, Alyssa works as a living skills specialist; helping take care of adults with developmental disabilities. After graduation in March, Alyssa plans on continuing her advocacy work and hopes to continue working with people with FAP or helping those with pediatric cancer. “Part of the reason I wanted to share my story was to give people an idea of what living with a rare disease is like. I don’t want people to feel bad for me because I see my disease as a gift. From my experiences writing my blog and memoir, I have realized that once meaning can be found within the challenges you have faced, you have overcome them.”
To learn more about Gardner’s and FAP you can visit The FAP Foundation.
If you would like to share your rare disease story with CooperGenomics, you can e-mail us here.