Let's Talk Sarcoidosis On The Road

Let's Talk Sarcoidosis On The Road

About The Blog

"Let's Talk Sarcoidosis On The Road" blog was created to educate, bring awareness and support to those with critical diseases and their caretakers.

Holding On To Hope

AwarenessPosted by Denise Joyner Tue, September 26, 2017 09:20:00

…With the hope of finding a cure, I focus my energy on promoting awareness for the cause.

Since my devastating diagnosis of Pulmonary Sarcoidosis in 1984, I have become an Advocate & Motivational speaker to help others understand this illness. Sarcoidosis is an autoimmune disease that causes non-cancerous granulomas that affects any major organ of your body, particularly in the lungs. It affects hundreds-of-thousands of men, and women between the ages of 20yrs-40yrs old. Due to the lack of awareness, most people have never heard of this debilitating disease.

It is very similar to Lupus, and Sjogren’s syndrome.

One day I had an annoying dry cough that just would not go away. I thought that I had the flu because my body was also aching. One morning I woke up and looked in the mirror - I looked like a skeleton. I had drastic weight loss, and suddenly I became short of breath just doing simple activities. I knew then something was terribly wrong. When I went to the local Medical Center for testing, the doctor said that I needed to be admitted to the hospital right away. He thought I had lymphoma. I was scared, and started to cry and pray. Somehow, I knew I was going to be OK. I stayed positive through my journey, and continued to pray because I had a daughter to take care of.

The doctor did a biopsy on my neck because my lymph nodes were swollen, and that is when I was officially diagnosed with sarcoidosis. My Liver, and Spleen was twice the size it should have been and as a result, the doctor then put me on very high doses of Prednisone to reduce the inflammation. Thirty years later, I can say that prayer works. I now use my experience as an example to help educate & motivate others globally through faith, and positive thinking. I have been living with sarcoidosis for 34 years which is currently in remission.

Please be an advocate for your own body, and if something doesn’t feel right, get it checked out. Don’t let a doctor tell you there is nothing wrong if you honestly feel otherwise. As individuals we have to take charge of our own health!

The Sarcoidosis Networking Association in Tacoma, Washington invited me to join their panel of physicians to speak about living with sarcoidosis. Since then, I have appeared in newspaper articles, magazines, television, and radio interviews. I also had the priviledge invited to go to Senator Barbara Mikulski’s office on Capitol Hill to discuss sarcoidosis healthcare issues and concerns. I hope that my words have inspired you in some way. Please leave your comments. I would love to hear from you.