Category: Patient Voices

Swimming for Sarcoidosis Awareness

Swimming for Sarcoidosis Awareness

While all manifestations of sarcoidosis can causes physical symptoms, neurosarcoidosis in particular can come with serious mobility challenges. Mark Taylor is a neurosarcoidosis patient from New Zealand who is overcoming the challenges of neurosarcoidosis to raise...
Feeling Grateful

Feeling Grateful

Last year we asked FSR Ambassador, Mark Landiak to share what he was grateful for during the holiday season. A year later it all still rings true. When FSR asked me if I’d write a blog on what I’m grateful for, I almost didn’t know where to start. I’m often up...
3 Tips to Beat Stress While Playing the Waiting Game

3 Tips to Beat Stress While Playing the Waiting Game

Be patient.  That’s what I tell myself, again and again.  It’s easier said than done when you are waiting to feel better. I was “officially” diagnosed with sarcoidosis in January 2013.  Like many people with sarc, I had mysterious symptoms for years until a lung...
Leaving My Legacy

Leaving My Legacy

As a relatively younger woman (ok …in my 40’s, but that is all I am saying!), I certainly do not spend a lot of time thinking about my own mortality. And yes, I DO battle sarcoidosis every single day, but I refuse to let this disease dictate my spirit of life and...
Patient Ambassador Advocates for In-District Lobby Days

Patient Ambassador Advocates for In-District Lobby Days

During the month of August, while congress members were back in their local districts, Rare Disease Legislative Advocates organized their annual “In-District Lobby Days,” helping rare disease patients connect with their local representatives to meet and...