How Technology Benefits My Life With Pompe Disease
I’ve been told that I spend too much time on my phone. I won’t deny that, because I need it to help me with my daily life, to make things easier for me.
I’ve been told that I spend too much time on my phone. I won’t deny that, because I need it to help me with my daily life, to make things easier for me.
The truth is, I won’t live a normal life, but that does not mean I cannot live my best life.
A lot of people see the wheelchair and automatically assume we can not do anything or they feel sorry for people like us. I do not want anyone to feel sorry for me, because I do not feel sorry for myself.
As strong as we seem, as strong as we are, we need the support of others like ourselves.
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.
Diet should be a major focus for physicians, especially those treating Pompe and other rare diseases.
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.
Pompe disease patients don’t share all the same symptoms, and because we don’t share the same symptoms, we don’t all require the same treatment.
I believe it is important to share with others what I went through in trying to find a diagnosis for my condition.
I thought it was normal to want to get married and start a family, but I learned very fast that society doesn’t see that for us rare disease patients.