Living With Two Rare Diseases

“Rare Disease Day is not just about PH; it is also a recognition of the many rare diseases for which resources and funding are often limited.”

By Shan Hardwick

“I have PH, caused by scleroderma. I had symptoms of a scleroderma-related syndrome for years, but no one put them together for a correct diagnosis. I started having more severe respiratory and heart issues in late 2015/early 2016. I finally got set up with the right mix of specialists, who found the correct diagnosis and treatments. I am so thankful for these M.D.s and my primary APRN. I am also thankful for the PHA. They’ve been a great information and support resource.

“Rare Disease Day is not just about PH; it is also a recognition of the many rare diseases for which resources and funding are often limited. I have some very dear friends who also suffer from rare diseases. I send them love and pray they find the providers, medications and support they need.”

2019-02-28T22:28:56+00:00 February 28th, 2019|