Annette DeBow will be contributing a series of guest blog posts leading up to her Trek for a Cure
This disease has changed my life in so many ways, and most of the changes have been unexpected.
When I was diagnosed in 2008, I had a 6 month old daughter and I was already dealing with so many changes around being a new mother, I couldn’t even wrap my head around what it meant to be diagnosed with a rare disease. The first doctor who suspected that something was wrong was my family doctor. I had taken my daughter to her 6 month check up and the doctor instantly knew that something was wrong, she said, “You look thin and tired- you need a CBC.” Later that week I received a call from her, and while she has had a patient with Polycythemia Vera in the past, could not remember the full name of the MPN and told me I had, “poly something and I’ll recheck your CBC.” Well, it was confirmed and with a HCT of 65, I was off to get phlebotomized –weekly and then every other week and then once a month until my HCT was back in the low 40s.
I shared the news of my diagnosis with family members and a few friends but that was it. I did not want others to know I was ill because I have always been an incredibly active and fit person. I was the woman who mountain biked the black diamond trails at ski resorts every summer. Learning how to interface with the medical community was something completely new and at times frustrating. I also learned that there was not a lot of research going on for rare diseases, like MNPs. It wasn’t until I decided to raise money for the MPN Research Foundation by hiking the John Muir Trail in 2010, that I really experienced another change. I learned about the power of advocacy. When I asked my community to help raise money for research, folks responded from all over the world to give. Wow, what a great feeling of support! That support, which led to more energy and enthusiasm, has me heading to the hills again to trek the Sierras. I hope I can share more of my experiences as I prepare for Trek for a Cure 2013.