My name is Jen Marchetti and I am from Massachusetts. I am a pheochromocytoma patient diagnosed in 2015. I know the many emotions that come with the diagnosis journey. I felt frustrated, confused, alone and a spiral of many more emotions. After the removal of my pheochromocytoma I had complications and was told by doctors they were rare compilations and that doctors were not sure why I was having these significant health issues. I decided to search for myself and found the PPA. I joined my first PPA awareness week in 2021 participating in a video of fellow PPA patients. The following year I decided to join the Awareness Week Committee and have been doing so ever since. I often joined the monthly support meetings and recently volunteered officially as a one-on-one peer support person.
Awareness, research, support and most importantly HOPE are very important to me and have been even prior to my diagnosis. Through my experience I learned the power of HOPE and that each one of us is a beacon of hope for someone else. There is no need to do anything to be that beacon just knowing there are others out there is helpful to us all. I am not alone; you are not alone. We all share in the uniqueness of this disease. No one person with a pheo or para has the same experience and with that I do believe we stand united.
As Patient Engagement Committee Chair my goal is to bring us together, to support us all in our quest to live our uniquely best life the best way we can.