Description
Rare Disease Day is a time for our community to come together in a collective display of support for raising awareness and improving the lives of all individuals and families impacted by rare disease, including APBD.
Adult Polyglucosan Body Disease (APBD) involves a missing or folded enzyme that causes toxic substances to build up in the body, often resulting in severe urinary control issues, progressive loss of feeling in the arms and legs, and in some cases, cognitive problems. Usually misdiagnosed as multiple sclerosis or ALS, this progressive, neurodegenerative disease usually begins between the ages of 35 and 50.
Our theme for this year’s Rare Disease Day is Shine a Light on APBD. Whether you are a patient, family member or friend, you can help illuminate APBD by emailing us a photo of yourself shining a light with a candle, flashlight or your phone (see sample photo of Erin, our Communications and Development Mgr). Along with your photo, if you would like to submit a quote about APBD that would help increase understanding of the disease, that would be great too! The photos and quotes will be compiled into a video montage and distributed widely with information on APBD through social media. Email your photo to Erin Stevens at [email protected]
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