Managing My Rare Disease Is a Life-Changing Daily Process Most Never See
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.
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.
I feel so strongly about being an activist for Pompe disease, my rare disease.
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.
After my diagnosis of Pompe disease, I did not think that I would be able to do what I loved most.
The truth is, I won’t live a normal life, but that does not mean I cannot live my best life.
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.
By trying to reach out and be open about my Pompe disease, I have had many others open up to me about struggles they are going through or trying to manage.
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.