Hope. Defined as a feeling of expectation and desire for a certain thing to happen. Not only does the Pompe community run on hope, but as we are seeing now in this global pandemic, the world does too. There has never been a more hopeful time for Pompe Disease.
As I approach two years since diagnosis of Pompe Disease, I cannot help but think on the opportunities I had had to learn and help push for the advancement of treatment for this disease. To me, having hope with Pompe means giving help. For our community, we must HELP to generate the HOPE. Without a consensus of patients and caregivers pushing for further development and further treatments, they will not happen. The message is simple, generate hope, give help. Be an advocate for Pompe. It may be hard to bring the courage to put your life and disease front and center, but by advocating, we have accomplished newborn screening in over half of the United States. By advocating, the world is listening to our needs and wants as a community, whether it be the media, lectures, non-profits or pharmaceutical companies. I have left out the biggest thing one can do as a Pompe patient advocate.... clinical trials. Take a serious look at what is available, see what will soon be available, and most of all, MAKE YOURSELF available. Hope for the future of Pompe does not happen without relationship between patients and research. If we as a community do consider clinical trials for the betterment of our future, there will be no hope for advancement.
I have hope. Hope for you and I. Hopeful we can continue to strive for a future free from the chains of Pompe that burden us and the ones who care for us. What continues to give me hope is the amazing opportunities presented to me as a rare disease patient. I'm given hope when I have the opportunity to express my experiences with others, whether it is a medical professional, a fellow patient, or a pharmaceutical company. Stay hopeful.
Sean Doerr
United States
Age 30
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