Posted in Advocacy, Health Communication

International Pompe Day


Today is International Pompe Day, a day to raise awareness about Pompe disease. Pompe is a rare genetic neuromuscular disease, and most of us who have it can share frustrating stories of misdiagnosis, including being told that nothing is wrong with us (when we clearly know there is). My diagnostic journey took me through just about every specialty department in medicine. Quite a few years and dollars were involved. By raising awareness, we might be able to help other Pompe patients and medical professionals reduce the time from onset of symptoms to diagnosis. This is important because, as I learned at the Duke Adult Onset Pompe Conference last week, “time is muscle.” While there is no cure, a treatment is available that slows the progression of muscle damage. The sooner treatment begins, the better.

To learn more about Pompe disease, please visit Pompe Community.

One thought on “International Pompe Day

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s