Rebecca H.
OPMD Advocate

In 2014 when my husband was finally diagnosed with OPMD, after a wrong diagnosis and knowing he was adopted, I decided to learn all I could about OPMD. At that time there just wasn’t much to find online, and there was no information in our rural location.

I managed to find an OPMD Yahoo Group online and made some connections there. One woman started an OPMD Facebook Group, and I eventually helped her as an Administrator of the Group. That connection grew into new connections. I learned a lot about OPMD and decided that I wanted to help others that were seeking information and needed help.

Several members of the group joined forces to gather OPMD information to share with the group members. We also began to advocate and create awareness for OPMD with the medical community. We were not very successful, in the way we had envisioned, but we did make some wonderful relationships and supported our Group members.

Since then, I’ve connected with many OPMD affected people from all over the world, many who are in the same situation — trying to find help, information, and doctors. Finally in 2022, I met Michele who stepped forward with an idea of starting an OPMD nonprofit, and I jumped right in to help. So, the reason I advocate for OPMD is because it feels good to do something rather than wait for someone else to! Another reason I advocate for OPMD is to help people, like myself and my family, find answers, support, information and community.