Sarcoidosis Doesn’t Have to be a Death Sentence

by: Stacy Sneed Special to the AFRO
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Nowadays there are many African Americans living and coping with life changing diseases.  However one disease that is drastically affecting the African American population is called sarcoidosis and there isn’t much known about this mysterious, life-destroying disease.

Sarcoidosis is chronic disease that causes inflammation in the body and affects multiple organs such as eyes, joints, skin, lungs, and heart. This disease is characterized by a buildup of cells in the organs that form small cluster called granulomas.  If left untreated sarcoidosis can spread to many parts of the body causing blindness, facial deformity, excruciating joint pain, heart or lung failure and can even lead to death.

My doctor first realized something wasn’t right with my health when I had a blood test and my white blood cell count was high.  I soon developed reddish lumps all over my body some that were itchy, had a burning sensation and were unbearable to touch. Following the skin deformities, I developed a chronic cough. The chronic cough made it difficult to breathe and made me incredibly fatigued.

Stacy Sneed

I felt like I was being suffocated slowly and there was nothing I could do for relief. My doctors eventually discovered that I had scaring on my lungs. Soon after, I was notified that this mysterious disease that was ravaging my body had a name: sarcoidosis.

African American families suffer from the effects of sarcoidosis.  The treatment for it can be expensive. These drugs, without insurance, can range in price from $5,000 to $16,000 per treatment. I’ve observed many people in urban cities such as Baltimore Maryland and Washington D.C people walking around with facial deformities that are consistent with the effects of sarcoidosis.  These facial deformities can have a profound effect on a person’s self-esteem confidence.  Those who suffer facial deformities from this disease are constantly stared at and harassed by the public who are unaware of what this is they’re seeing.

I had to live with the constant stares for many years until my doctor prescribed Remicade, which healed and restored my nose from its deformed appearances this brought back a little normalcy for my life.

After17-years of living with sarcoidosis I have realized the diagnosis wasn’t a death sentence. Getting educated on the latest treatments isn’t hard but it does take dedication and commitment. Part of that commitment is a healthy diet, plenty of fruits, green leafy vegetables, lots of water and eliminating all processed foods and sugar. I also focus on spiritual mediation, which has been effective in reducing stress and anxiety. You’re going to have good days and bad days but if you keep up the fight, and never give up, there is hope.

Stacy Sneed is the CEO and founder of Women of Life Changing, which helps women who suffer with health issue share their stories with others.

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