Living with Sarcoidosis

   Sarcoidosis is a chronic, systemic, inflammatory, granulomatous, disease of unknown origin. Sarcoidosis is found in one in fifty Black Americans. This makes it much more common than sickle cell anemia. The death rate from sarcoidosis is 10% and has claimed Reggie White, pictured above, who died at age 43. He had cardiac and pulmonary involvement. Also Bernie Mac died at age 50 from sarcoidosis.

Other Celebrities with Sarcoidosis:

Karen Duffy
Floyd Mayweather
Evander Holyfield
Bill Russell
Daisy Fuentes
Tisha Campbell-Martin

To paraprase a sarcoidosis advocate called "the gardener", sarcoidosis is "kind of like other major diseases, but without the recognition, attention, sympathy, funding, treatment, or cure."

Karen Duffy has said about living with sarcoidosis, "I have mourned for my old life and I'm trying to figure out who I am now."

I have been living with sarcoidosis for 35 years. However, my illness was misdiagnosed for years, and only recently has been clarified. How does sarcoidosis affect me on a daily basis? Well, first of all, I had to quit my job as an RN, which was very difficult. I tolerate very little activity, about 2 hours of activity, outside the home, every other day. The sarcoidosis has affected my right eye, heart, lungs, and nervous system. I have daily pain which varies in intensity and chronic fatigue.
   Sarcoidosis is different for each person who has it. Some are still able to work, and then some die from the disease.
   Jen Barrick was involved in a near fatal collision and had this to say about living with a disability: "I want everyone who is broken or hurting to know that God can still use you. He doesn't look down on you. He looks on you more. The weakest people have done the most for God, because in our weakness He is strong. Don't ever be ashamed of your weakness. God wants you to see the potential of,who you are going to be with His help. He wants to bring beauty from your ashes and heal your wounded heart. God wants to use you where you are, as you are. And he promises to carry you on the days you can't see ahead."   Jen Barrick

   I would not have chosen to live with a chronic, painful, debilitating disease. But I am trying to make the best of the situation where I find myself. I have to find my worth and value outside of a profession I can no longer participate in. I am still here and there is always hope.