February is Rare Disease Month, a time to raise awareness and educate others about the many different rare diseases in the world. When I tell people about my rare disease, Pompe disease, the first thing they ask is, “can I catch it?”
And then they ask to learn more about what “rare” means.
While a rare disease is unique, there are 7000 known rare diseases. So if people become more aware of all the different types and symptoms of various rare diseases, they could help one of their friends or family members seek guidance.
I know it took me 10 years of going from specialist to specialist with no clear indication of why I was experiencing such debilitating pain and muscle-wasting symptoms before I was helped, not by a doctor, but by a rare disease nonprofit organization.
My cousin had just cycled in a charity event called “Pedalling-4-Pompe,” and he made the connection with Pompe disease and put me in touch with the founder of Rare Disease South Africa. She explained to me a lot more about Pompe than I was told and mentioned how treatment could help save me and help me have an improved quality of life.
It was this organization that helped fight for me to obtain this life-saving treatment that has helped me so much to break down the excess accumulation of glycogen in my body and, in turn, allows my bodily systems, like my heart and lungs, to regain strength and start functioning better again.
We need you to share your rare color. Colors can speak louder than words. Color has no limits, and neither does “rare.” Every one of us has special qualities.
People from all over with rare diseases need you to dedicate your daily workout to a rare warrior. Simply go for a walk, swim, gym, cycle, and write the rare warrior name on your hand. Then grab a selfie during or after your workout and share it on social media to help us share the awareness of Rare Disease Month and Rare Disease Day (February 28).