Huntington's Disease Society of America
I remember the very gray week in November of 2008 where I received two of the most troublesome diagnoses a person could be handed: stage three breast cancer and a CAG of 42. My sister Jesse had found out a week earlier that her CAG was 42. That day she made me two cards. One simply said “I’m sorry you got cancer”. The other; “I’m sorry you got a genetic brain degenerative disorder”. Over a night of some intense Karaoke singing and margaritas we vowed to be strong together and to be positive mentors to those who were handed the same troublesome diagnoses. We vowed to not let it affect our self-esteem, our professionalism, our ability to be good mothers and wives, or our desire for shoe shopping.
Over the course of the past five years, I can say that we met and sometimes exceeded our goals. I am proud to say that we not only started the Northeast Ohio Chapter’s Fore-A-Cure golf outing but we also became NEOH chapter board members. We felt that we were able to give a voice on behalf of those affected with Huntington’s Disease. I often say that I have unique understanding of symptoms that can occur because I can feel certain changes and can still verbally explain those changes.
We speak at Case Western School of Medicine to first year medical residents. We also attend the national and regional conventions to make sure that we are up-to-date on how we can help our chapter exceed our goals. Jesse became chairperson of our Education committee and has brought a young and fresh approach to our Media and Communications efforts. I am proud to say that I am Vice President and actively involved in most events including our Dancing Like the Stars gala, our Hoop-a-Thon and our Team Hope Walk. Jesse and I also designed an HD Empowerment workshop that is a more nurturing step-by-step tool that those at risk or with a longer than normal CAG can use to get advice on day-to-day struggles and how to combat them. Outside of the “HD Realm” we are successful business women. Jesse is a Project Manager at Lorain National bank where she helps implement financial solutions. I am a Business Analyst at OverDrive, Inc., a world-leading company in distributing eBooks and digital media to schools and libraries. Jesse has three beautiful children: Connor, Claire and Ledger (Ledger is HD free as he was testied in-vitro) and is married to her high school crush Matt Lis. My husband Wayne and I have one 7 year old son named Logan. Jesse and I are both busy career-minded women but our success is due to the fact that we acknowledge our struggles. My open communication with my employer, my medical doctors and my support will help me stay in the work place for a long time. It will help me stay involved in activities with our local Northeast Ohio chapter and national HDSA. And, most importantly, I am proud to say it will “set my family up for success” no matter what.
The point of this story is that you have to take what’s handed to you and try to use that knowledge to your benefit. Jesse and I have a good understanding of the possibilities of what can happen when you have a longer than normal CAG. We can use this to prepare, accept, and manage anything that comes our way. We respect someone’s wishes to not get tested however we encourage them to also attempt to gain understanding of the “possibilities”. Those of you out there, take a deep breath and know that there are others like Jess and I that can be your support. Know that there are tools through HDSA that you can use to your benefit to live your life to the fullest.