By Fletcher Word
The Truth Editor
May is Lupus Awareness Month and for the fifth straight year, Rachelle Roy, herself a lupus patient, is doing all she can to heighten that awareness within the northwest Ohio area.
Systemic lupus erythematosus (SLE), or lupus, is a chronic autoimmune disease where the immune system mistakenly attacks the body’s healthy tissues.
This year, her Lupus Awareness Weekend will be May 15-17, culminating in the Lupus Walk that Sunday afternoon. And this year she will have some help with that event.
For the first time, the Lupus Foundation of America, Greater Ohio Chapter, headquartered in Cleveland, has joined forces with Roy and has launched an effort to bring much needed attention to Roy’s efforts
On March 11, representatives of the Lupus Foundation were in Toledo to start the push. They brought together a number of lupus patients and caretakers for a luncheon at the Old Bag of Nails on ProMedica Drive to form a focus group to discuss lupus issues.
The Ohio Chapter was going strong for years, said Suzanne Tierney, chapter CEO, until COVID arrived in 2020. Then financial issues caused a cave-in and the chapter lost a number of staffers and its connection with Toledo. Tierney plans to change that. The Greater Ohio Chapter will join Roy on May 17 for her annual walk.
The point of the focus group was to try to examine issues and find out “what do they need and how we can manage the journey back,” said Tierney, herself a lupus patient.
About a dozen patients and caretakers joined Tierney and Alex Acevedo, community engagement & events manager with the Greater Ohio Chapter, for lunch.
Among the patients attending the luncheon was Louis Goings who was diagnosed with lupus 22 years ago. Men account for only 10 percent of all lupus patients and, not surprisingly, Goings was the only man present at the luncheon.
Goings suffers from sun lupus which has left him in constant pain and severe scars on his head. He has medication – lots of medication – to take, but he rarely does. Except for a cream for his head scars, the medication – oral medication – simply doesn’t work, he says. “I got all kinds but why keep taking it?”
His frustration with the disease and the medical professionals he has encountered is palpable.
“They can’t figure out what to do with lupus,” says Goings. “It’s a guessing game with them. I have been going in and out of the hospital for 20 years.:”
Goings’ frustration his disease is similar to that of most patients. The disease is not easily diagnosed, medication is a hit or miss solution and it can affects patients in so many different ways – the brain, lungs, kidneys, joints, eyes, heart, digestive system, skin and/or the cardiovascular system.
The Lupus Awareness Weekend kicks off on Friday May 15 with a Wig Giveaway from 4 to 9 p.m. at The Trunk. On Saturday, there will be Karaoke Night from 7 to 11 p.m. at The Bluegill and, on Sunday, The Walk at Ottawa Park starts at 10 a.m., with an After Walk Celebration from 4 to 8 p.m. at This Is It.
