Will You Join Us?

A few years ago, Victor Eyo started to feel some tingling at the tip of his right thumb, which eventually progressed to his entire arm. Initially, he thought it was carpal tunnel, but that was ruled out by his orthopedic doctor. A few months later, he met with a neurologist, who suspected he had neurosarcoidosis based on his medical history and clinical findings.

Unfortunately, Victor's story is far too common. Even though the medical community has known about sarcoidosis for almost 150 years, how it develops and whether or not it will respond to treatment is still a mystery. Despite the fact that more than one million people worldwide suffer with this disease, often times, the first time a person learns about the existence of sarcoidosis is when they are diagnosed.

#SaySarcoidosis is a chance to change this. It is a chance to help people find a community of individuals who are also searching for answers. As Victor notes, “Most importantly, get together with other sarcoid patients in a group, blog or forum. I didn’t have that until November 2020, when the Sarcoidosis Patient Support Group was established. This group is an extremely useful resource to not only learn about the disease, but to openly discuss patient sarcoid issues and experiences.”

The Johns Hopkins Sarcoidosis Center along with its Patient Advisory Board are launching not only a social media challenge in order to raise public awareness about this debilitating disease, but they are also hosting the Say Sarcoidosis Patient Education Event. This event will provide a full day of FREE education about sarcoidosis for those with the disease and those helping them. Donations through this page will go directly to the Say Sarcoidosis Patient Education Event and help us create community, spread education, and ensure that this is made freely available to all patients.

Will you join us and #SaySarcoidosis?