Being rare not only means you learn to perform new techniques and skills but also that the people around you may have to alter their lives to assist you.
All articles by Bruce Campbell
The endless question I ask myself every year is why must I prove that my disease has not magically disappeared.
After being diagnosed with Pompe disease 6 years ago, I was advised to not push my body at all and to stop most of the sports I was attempting to do.
On this Rare Disease Day, I encourage everyone to climb that mountain, swim across that river, catch that wave. Do not be just a spectator.
I believe it is important to share with others what I went through in trying to find a diagnosis for my condition.
Pompe disease columnist Bruce Campbell discusses issues related to the long road from symptoms to diagnosis and the importance of nutritional practices.