Inspire Rare Disease community Archives

Tackling the Challenges of Rare Diseases: Introducing RareXcel

Tackling the Challenges of Rare Diseases: Introducing RareXcel Neurofibromatosis is a rare, genetic condition causing tumors to form on nerve tissue all over the body. The masses can grow both internally and externally, often appearing as lumps under the skin surface. People can experience deformities of skeletal structures as well, making this a visible disease. As a member of Inspire’s Neurofibromatosis Network support community relates, living with this condition can test self-esteem: “I'm disappointed. Life had been going pretty smoothly for me these past couple weeks….Then today happened...the depression and darkness comes out of nowhere stealing [...]

Rare Disease and Social Media: Making Connections

Rare Disease and Social Media: Making Connections Being Alone and Disempowered Keeping illness, pain and suffering a secret for years is the reality for many people with rare diseases. Now, on social media, they are writing about it, sharing the desperation and the hurt. And they are finding each other in the process. Joy Aldrich kept her diagnosis of Charcot-Marie-Tooth a secret from everyone (including her physician) for 33 years.1 Dawn Nellor, a patient with pulmonary sarcoidosis, describes one reason for this, “The behavior of past appointments with physicians…have numbed me to their raised eyebrows and [...]