Sojourner’s Truth Staff
May is National Lupus Month and dozens of purple-clad marchers commemorated the event on Sunday, May 23 with a walk that started and finished in Ottawa Park.
Lupus is a chronic, autoimmune disease that occurs when the body’s immune system attacks healthy tissue rather than fighting infections. Inflammation caused by lupus can affect many different parts of the body including joints, skin, kidneys, blood cells, brain, heart and lungs.
The symptoms can vary greatly among those affected and rarely are any two cases exactly alike. Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, may be temporary or permanent. Most people with lupus experience episodes – flares – when signs and symptoms get worse and then perhaps even disappear for a while.
The typical symptoms of lupus include fatigue, fever, joint pain, rashes on the face that generally resemble a butterfly shape, skin lesions, shortness of breath, chest pain, dry eyes, to name some.
Lupus is much more common in women than men (a 10 to 1 ratio), affects all ages but is most often diagnosed in young adults – typically ages 15-45 – and is more common in African Americans, Hispanics and Asian Americans than in Caucasians.
Rachelle Roy, a Scott High School graduate who attended Bowling Green State University and has been a letter carrier for 25 years, first experienced a skin rash in her early 30’s – a skin rash that was not properly diagnosed in the initial stages. That early stage appeared as an acne breakout and the medicine prescribed was ineffective.
“How people treated me!” she said recalling the reactions that she would eventually become more accustomed to encountering. The scarring, she thought, did not make her look feminine in some peoples’ eyes. “People are not always willing to take a picture with me.”
There are four kinds of lupus: systemic lupus erythematosus (SLE), the most common form; cutaneous lupus, limited to the skin; drug-induced lupus, cause by certain prescription drugs; neonatal lupus, a rare condition that affects infants of women who have the disease.
Roy had encountered cutaneous lupus that would quickly scar her face causing her to begin a lifetime of caution – avoiding stress as much as possible, using the proper medication and, above all, staying out of the sun. “Sun is like kryptonite,” she explained.
On Sunday, May 23, Roy assembled her group of purple-clad supporters, those afflicted with lupus and family members and led a 3.5 mile walk to raise money for lupus awareness and treatment. The event was enhanced by the presence of lots of music and food and a beautiful day full of sunshine.
“I was able to meet new survivors, hear more stories of how lupus has affected family members, get people out to walk in memory of their loved ones – it was just a perfect day,” said Roy reflecting later on having organized the first ever lupus walk in Toledo. Her first one, not her last, she promised.