By: –A Late-onset Pompe patient posted on: May 14, 2012

Something to think about……

A cause that is very near and dear to my heart is organ donation. I have a close relative that under went a kidney transplant a few years ago that saved his life. I have the belief that your spirit is what goes on and your body is just the vessel that we are using during this lifetime. For many years I thought that I would be able to help others after my time here is over by donating my organs to help others that need them. We are lucky to live in an age where this is possible and I planned to take advantage of this program.

Being diagnosed with Pompe disease changed those plans. I would no longer be able to help others by being an organ donor due to the disease and its effects on the organs and the tissues in my body.

Soon after being diagnosed with Pompe disease, I thought to myself, “how can I help others with this disease and really make a difference to help their lives for the better?” I never wanted to be a “guinea pig” or “science project”. Frankly, being one of the first to try a new medicine or treatment scares me since I have had issues with being allergic to medicines in the past.

After a lot of soul searching I found a way to help researchers learn more about Pompe disease and the effects that it has on our bodies. I have decided to donate my remains to research. It was a little strange to talk about since many people don’t even want to think abut death let alone talk about it. I first approached my doctor about it. He is a genetics specialist and he agreed with me that the best place to donate my remains to would be the team at Duke University. They are working on many research studies and really understand Pompe disease. My next step was to talk to close family members and see what their feelings were. They all agreed with me that it was a wonderful thing to do and none of them had any issues with my decision.

I then had the opportunity to meet Dr. Kishnani and the Duke team at the AMDA/IPA conference in San Antonio in the fall of 2011. As soon as I told them of my decision, I knew that I made a wise choice. They were so caring and kind. The Duke team was able to guide me through the paperwork needed and answered any questions that I had.

My purpose in writing this article was to raise awareness of this program and to inspire others to find a way that they can help with research to make a difference in the future of Pompe disease. Maybe this will lead the researchers to find a cure or better treatments for the entire Pompe community.

If you have any questions about donating your remains or the remains of a loved one, you can contact Stephanie Austin from Duke University at 919-668-1347.


A Late-onset Pompe patient