A life with Lupus is celebrated



A rally and celebration of life was held on Saturday, May 15 at Gladys Whidden Park in Walterboro to educate the public on Lupus, a disease that one Walterboro woman said she has managed to survive.

Stacy Pinckney has had lupus and fibromyalgia for 25 years. It’s unusual for someone to survive that long with this disease, she said, and her courageous battle was cause for celebration.

Dr. Edward McNeil was present to speak to the crowd about the disease and to give hope to those with lupus.

Dr. McNeil is an Internal Medicine Specialist in Port Royal, S.C., and has over 41 years of experience in the medical field.

“Lupus is a terrible disease, but it can be controlled, and Stacy Pinckney is proof of that,” said McNeil.

Pinckney also spoke to the crowd that gathered to celebrate her life and her battle with the disease.

“This all started because I would often have a rash around my nose. I later found out this was known as ‘The Butterfly Rash’,” said Pinckney. “Around the age of 25, I began to have severe pain in my arms, legs, hips and back, and I would get very tired. I thought it was because I was working full-time and going to school full-time while taking care of my 3 year-old son.”

One day while visiting her mother at the hospital, Dr. Sanjay Kumar came in, said Pinckney. The doctor noticed the rash around Pinckney’s nose and asked if she had ever been checked for Lupus. “I’d never even heard of it,” said Pinckney.

She didn’t get checked, and after two years the pain and fatigue worsened. “I was so exhausted! The next week, Dr. Kumar had me tested me for lupus, and I tested positive,” she said.

“I was devastated and full of fear! I went to a rheumatologist who then diagnosed me with fibromyalgia. This was something else I had never heard of,” she added.

According to the Lupus Foundation, Lupus is a chronic (long-term) disease that can cause inflammation and pain in any part of the body. It’s an autoimmune disease, which means that the immune system, which usually fights infections, attacks healthy tissue instead.

Lupus most commonly affects skin, joints, or internal organs, like the kidneys and heart.

The early signs and symptoms of lupus are generally the same as the symptoms of lupus, including extreme fatigue, joint pain, or a butterfly rash. However, the early signs vary widely from person to person.

Certain people are at higher risk for lupus, including women ages 15 to 44 who are African American, Asian American, Hispanic/Latino, Native American, or Pacific Islander.

It can also attack people who have a family member with lupus or another autoimmune disease.

“With lupus and fibromyalgia, I had to pace myself,” she said. “My biggest problem was stress! I could not afford to be stressed out. My pastor Overseer Jeannette Harley, taught me about healing of the body, soul and mind,” she said.

Pinckney specifically thanked Latoya Bryan, Elaine Roberts, Valerie Fields, Nicole Grant, Niki Fields Hamilton, Nancy Morgan and Alicia Brathwaite for their support.

She also praised Dr. Edward McNeil and Dr. John Creel and her friend, Wanda Crosby.

“My parents, Thomas and Nadine Pinckney helped me so much! My mom is still here loving and praying for me. I am grateful for my siblings, Cynthia Jones, Thomas Pinckney, Hartford Jones (Brother-in-Love), Ida Pinckney and Shemeka Brown,” she said. “My nephews, nieces, aunties, uncles, and cousins who have my back … and my son, Jamel, has always been my biggest supporter. He has seen a lot of my pain,” she said.

“I am so grateful for the man he is. He is a strong, hardworking provider and wonderful husband and father. He married his high school sweetheart, Shapel. I could not have asked for a better daughter-in-love.

“I want everyone to know that if you have lupus, you can make it. I am sure many said that I would not make it, and sometimes I was not sure I would,” she said. “I am celebrating 25 years, and I know that God is going to continue keeping me because I have so much more to do for the Kingdom of God.”


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