‘I will continue to fight every day to live a healthy life’
Waldorf woman living with sarcoidosis raising awareness
There are very few diseases that leave doctors scratching their heads. Sarcoidosis is one of them.
Despite multiple misdiagnoses, Waldorf resident Stacy Sneed is a 17year sarcoidosis survivor who still suffers from the disease and hopes to raise awareness about it
in the community. She describes her journey as one filled with bravery and courage, because she refuses to let the disease control her life.
According to the American Lung Association, sarcoidosis is an inflammatory disease that causes clumps of cells to form in major organs of the body, including the lungs, heart, kidneys or brain. It often mocks lupus or tuberculosis.
Common symptoms include development of a hoarse voice, coughing, depression, painful sensations in areas with bones, swelling of lymph glands in the chest, reddish eyes and bumps on the skin, enlarged liver and development of kidney stones. It usually strikes 20- to 40-yearolds and affects tens of thousands of people worldwide.
“With sarcoidosis I’ve experienced many things that I never thought I would, but it’s making me a stronger person day by day,” Sneed said. “As I rejoiced during the years of my illness being in remission, that old mystery disease decided to come back in my life and this time it came with the vengeance. Stress triggered the illness to flare up and I had to retire from my government job, where I was employed for over 20 years. I had to walk away to focus on the healing of my mind, body and soul.”
Her husband, Kenneth Sneed, said they were still newlyweds when his wife was first diagnosed with the illness.
“I remember praying because I was terrified about the thoughts of losing the woman I loved,” Kenneth said. “Witnessing my wife going through her battle with this dreadful disease was the hardest thing I had to go through, but I had to remain strong to encourage my wife so that she could overcome the effects of this disease.”
After delivering her youngest child, Kevon, in 2000, Stacy began experiencing a persistent dry cough, shortness of breath and swelling of her lymph glands. One misdiagnosis after another — acute sinusitis infections, allergies, an allergic reaction to particular types of antibiotics — stacked up. Meanwhile, she was sent home with antibiotics and continued to suffer.
“Lesions were building up inside my nose so much that my nostril became disfigured and I was unable to use the bathroom regularly. I went from a courageous, hardworking, energetic person to someone who had problems with breathing, sleeping, walking, talking, driving and extreme fatigue. I was fighting for my life,” Stacy said.
Several of Stacy’s family members had sarcoidosis — her uncle and grandmother, specifically — so, later, she had her doctors test her for the same disease. Test results showed she did have it, but the relief of a diagnosis was tempered by doctors telling her it has no cure.
Stacy said she was prescribed prednisone to treat her sarcoidosis, but the drug had painful side effects: migraines, weight gain, hallucinations and a disfigured nose.
“When my nose began to spread completely across my entire face I was called names such as monster, ugly, and I had a brick thrown in my face. Babies would cry, people would stare at me in disbelief when they saw me out in public. I began to feel like I was some type of circus animal,” Stacy said.
The many years of using prednisone did not help, so Stacy’s doctor suggested she begin a low dose chemotherapy treatment.
“I had to take the treatment every three weeks and it helped the illness go into remission. My nose begin to look normal and I began to feel better,” Stacy said. “I started exercising and eating healthy, meditating and praying for God to rebuild my life back mentally and physically and my new doctor removed me from taking chemo.”
The disease greatly affected the lives of her children, too.
“When my mom was diagnosed with sarcoidosis, it felt like a part of me was slowly going away,” said son Kevon. “Seeing my mom go through all of the pain she was enduring and chemo treatment made me worry about my mom every single day. I thought I was going to lose her. When my mom survived, it showed me to not take your mom for granted and love her while she is here because you only have one mom.”
“I was very sad because I didn’t want to lose my mother,” said Kenneth Sneed, Jr. “It was terrible for me, but to be able to say my mother is still here is a blessing. I hope that people learn that any given time your life can change and more importantly, if you have any symptoms of sarcoidosis, please seek help by going to the doctors before the illness flares up and becomes uncontrollable.”
Kenneth Jr. said he cried every night as a child for his mother to get better.
“My mother is a hero, an icon and a fabulous survivor,” said Sarita Sneed, her daughter. “Sarcoidosis affected my mom’s outer appearance and kids at my school would make fun of her. That would hurt my feelings and I cried because of it. However, my mother is so strong that she told herself she had no choice but to fight this battle.
“She developed so much knowledge about her illness and encourages others not to give up on their battles, to love themselves and appreciate what they have,” she continued. “The sarcoidosis didn’t stop her; she stopped the sarcoidosis.”
Stacy is also an entertainment booking agent and the CEO and founder of Women of Life Changing Inc. She has worked closely with numerous entertainers including three-time Tony Award winner Hinton Battle, choreographer Sean Bankhead and Mitchell Kelly from TV show “So You Think You Can Dance.”
Although the sarcoidosis has returned in recent years, Stacy continues to fight and focus on educating those who are suffering with the illness or anything similar. She said sarcoidosis is an illness that tends to be overlooked, and she hopes to spread the word to make a difference in the community.
“I will live life to the fullest and continue to fight to put my illness back in remission,” Stacy said. “I feel my life changed for the best, I will not let sarcoidosis control me anymore; I will control sarcoidosis. I will continue to fight every day to live a healthy life.”
Stacy Sneed, an entertainment booking agent and the CEO/ Founder of Women of Life Changing Inc., in 2016. She is a Waldorf resident living with sarcoidosis, an inflammatory disease that affects the organs.