October is Lupus Awareness Month.
Lupus is a chronic, autoimmune, inflammatory disease, according to the Lupus Foundation of America. It affects the skin and various body parts. No cure currently exists.
Fifty Bermudians might have the disease, according to a guesstimate by Margaret Wade, president of the Lupus Association of Bermuda.
She doubled the number of known sufferers, noting that people who are more private don’t necessarily join the association.
Mrs Wade has lived with lupus for the past 20 years. She’s learned to control the rashes that emerge on scalp, back, chest, arms and ears by limiting her exposure to sunlight and using sunscreen.
“With me not protecting the outer [layer of skin] with sun-block, it causes more breakout in other parts of the body, even though they’re not exposed to the sun.”
She’s also learned to lessen the hand swelling, joint pain and fatigue of lupus by avoiding stress and taking her medication as required. But until this difficult to diagnose disease was understood to have been the problem, it exacted emotional as well as physical distress.
“With the swelling of the joints and real chronic pains and fatigue… I just stayed in bed [for a month], and I had my family, whatever I needed, put it beside the bed before they went off to work.”
Mrs Wade was hospitalized for a further two months while doctors searched for answers.
“They seemed to not know what was going on,” she said. “… You get anxious to know what is wrong. In that period, they cannot really treat you until they diagnose you. It was a difficult time.”
As soon as lupus was discovered to be the problem, she was put on a high dose of Prednisone. The steroid initially helped her to feel better.
“[But it] caused much damage. It pushed out through the scalp like a fungus, and it was out of control.”
Another hospitalization, drips that failed to clear the fungus, and a trip to Boston followed. From there, a sulphur-containing medication resulted in an allergic reaction. Mrs Wade’s scalp cleared, but she lost her hair and a rash broke out on her body. A specialist here withdrew the medication.
Her children were two, three and 11 at the time.
“My first year, I just went through a whole form of depression trying to determine how long I was going to live, wondering who was going to be that mother for my kids.
“Through it all, my husband was able to do all that had to be done. That helped to get me through my recovery.”
Mrs Wade not only deals with the affects of lupus, but also the side effects of her medications.
She’s been on and off Prednisone as flare-ups warrant, but then has a prescription to offset any negative affects on her bones.
Plaquenil is a drug that can be taken every day, if necessary, but even this substitute for Prednisone has caused Mrs Wade to suffer headaches. She is a vegetarian. Due to a blood deficiency, she receives Vitamin B12 shots quarterly.
As a consequence of the need for medical support, Mrs Wade sees her general practitioner.
She visits the dermatologist, attends a specialist and consults with the Bermuda Cancer and Health Centre.
“Lupus sufferers might have kidney problems. Some are affected inwardly. Some may have been affected by stroke or other ailments from having lupus.”
Control is key, according to Mrs Wade.“I had to make changes with my life, I guess the worldly living. I went into the church to give my heart to the Lord.
“That helped me in my daily living. It’s something that worked for me.”
Though she takes care of herself, Mrs Wade admits to going too much, doing too much.
She realizes she must slow down, stay calm and learn to say, ‘no’.
“I had to examine what was my life before being diagnosed. I believe stress brought it on… I just know I have to take it easy.”
Noting that she was diagnosed in 1990, she will celebrate her 50th birthday in January and 25th anniversary in March, Mrs. Wade said: “I feel so grateful and so blessed to be able to tell my story.”
To promote Lupus Awareness Month, the Lupus Association of Bermuda will likely invite a speaker to address one of its meetings.
Educational literature will probably be placed in the main post office and perhaps an hour-long walk undertaken.
Mrs Wade noted the importance of joining the Lupus Association and how the $25-membership helps the lupus patient to know they’re not alone.
“We try to help wherever we can… We definitely don’t want the financial to be an issue. We will assist where necessary.”