Join in raising awareness on Rare Disease Day Feb. 28

Did you know that there are more than 25 million Americans who are impacted by rare diseases? A rare disease is one that affects fewer than 200,000 individuals. There are currently over 7,000 identified rare diseases.

Rare Disease Day, occurs on the last day of February each year.

On Rare Disease Day, millions of patients and their families around the world share their stories to promote awareness of the challenges, hopes and needs of those living with rare diseases. The day was launched in Europe in 2008 by EURORDIS, and is now observed in more than 65 nations.

The zebra is the official symbol of rare diseases in the United States and is noted for its black and white stripes, which are central to its uniqueness. Everyone has his/her own stripes, those characteristics that make each individual distinct.

On Sunday, Feb. 28, #RareDiseaseDay, come together to show your stripes and raise awareness! Join them and learn more at rarediseases.org.

I wanted to bring your attention to two rare diseases: hereditary spastic paraplegia and primary lateral sclerosis, which are related to amyotrophic lateral sclerosis. There are only 30,000 people in the U.S. with hereditary spastic paraplegia, only 2500 with primary lateral sclerosis and 20,000 with amyotrophic lateral sclerosis.

Hereditary spastic paraplegia and primary lateral sclerosis are chronic, degenerative neuromuscular diseases like Lou Gehrig's (ALS). The disorders are progressive and lead to patients being unable to walk. Many times, patients with hereditary spastic paraplegia and primary lateral sclerosis are initially misdiagnosed with ALS, multiple sclerosis, or cerebral palsy, causing confusion and improper treatment.

The Spastic Paraplegia Foundation (sp-foundation.org) is dedicated to advancing research and finding the cures for two groups of closely related, progressive neurological disorders: primary lateral sclerosis and hereditary spastic paraplegia.

If you have further questions or want more information, contact SPFIllinois@gmail.com