I just finished photographing the Ultra Orphan Conference for Centric Health Resources and boy did it ever make me thankful for my health and the health of my loved ones. A panel of patients dealing with rare illnesses talked at the conference about the struggles that they go through dealing with their illnesses when it comes to their health care. Things that I really never thought about before. I can’t imagine fighting for my life while at the same time trying to find doctors and providers that know about my disease and how to treat it. I can’t imagine fighting to gain access to the medications that I need and then trying to figure out how to pay for treatments and the slew of meds that I need to survive. I’ve heard the numbers before, but these individuals really put it in perspective and made it real. Imagine paying over $100,000 a year for one medication. What about $300,000 for one medication? Now think about taking 10 different medications or more to treat yourself. I really can’t imagine. Can you? You’d never know these individuals are living with these rare diseases and struggling with everything associated with their illnesses. They look like you and me. They are uplifting and inspiring. Thank goodness for the various organizations, companies and individuals who work hard to improve the quality of life for those who are living with various illnesses while helping provide therapeutic advancements these people deserve. I am so thankful for my health today and I only hope that I never learn, from first-hand experience, what it would be like to have that taken away.
