However, being an adult patient presents its own unique set of challenges. Adult patients are their own advocates while attempting to balance the realities of life as an adult—spouses, jobs, children—and while managing their conditions. However, much of the rare disease community's language fails to recognize adults patients.
Here, one mother of an adult FMD patient shares her perspective:
My daughter is an adult with a rare disease—fibromuscular dysplasia. She is no longer a cute little kid, but she is still my child. The thought that you could lose your child breaks your heart, no matter what age. Even though she manages her own medical treatment and has the support of a wonderful husband, we have always been there for the surgeries, the invasive tests, and the long recuperations. When your child has a rare and serious disease you can never completely relax because the next ring of the phone may bring dreaded news. I try to not let the knowledge that I will never have grandchildren make me bitter. I confess that the probability that my husband and I will outlive our only child is a bleak prospect.
FMD Chat encourages adult patients to make their voices heard in the rare disease community on this Rare Disease Day, Feb. 28, 2014, and throughout the rest of the year. Help educate rare disease organizations such as the National Organization for Rare Disorders, the Global Genes Project, EURORDIS, and others about what it means for you to be a rare disease patient.
