By Eulalee Thompson, Staff Reporter 'A diagnosis of Systemic Lupus Erythematosus (SLE or lupus), a chronic, inflammatory autoimmune disorder, sometimes hits patients with a thud, because
it is often the first time that they are hearing about the disease and its episodic nature characterised by periods of remission and then exacerbation.'
THE PARTIALLY-PEELED orange fell from Kerine Hamilton's trembling hands and onto the kitchen floor, along with the knife she was using to peel it. The news was too overwhelming. Her doctor had just called; she said that her blood tests came back positive for lupus. She had to go see the specialist right away.
"I actually felt scared...I remember going to work and just standing in the lady's room and saying, 'Oh Lord this is not happening'. It was a Monday and I remember that by coincidence, on that very morning, I was hearing a former co-worker of mine, who was a member of the Lupus Foundation... on the radio, talking about lupus because it was Lupus Awareness Month. Basically that was the only knowledge I had about this disease," Mrs. Hamilton said.
A diagnosis of Systemic Lupus Erythematosus (SLE or lupus), a chronic, inflammatory autoimmune disorder, sometimes hits patients with a thud, because it is often the first time that they are hearing about the disease and its episodic nature characterised by periods of remission and then
exacerbation. Though anecdotal reports point to an increase in local incidence, the general public
and, based on Mrs. Hamilton's story, the medical
profession, still don't know enough about the
condition.
It is because of the widespread ignorance about lupus, that Mrs. Hamilton had taken the long route to arrive, finally, at her diagnosis. Painful joint symptoms throughout her high school days had taken various medical doctors down the path of arthritis, but all those diagnostic tests came back negative. No one thought of the possibility of lupus. It was the same painful joint symptoms and swollen fingers that resurfaced after a motor vehicle accident in 1996, when Mrs. Hamilton was then 26 years old, that would finally lead to her diagnosis.
"The doctor had said that it (my painful, swollen fingers) had nothing to do with the accident. I called her...(again) to say that the pains were back and that I needed something for them. I wasn't even talking about the swelling because I wasn't even noticing that. The doctor thought that this (the symptom) was strange," she said.
Then the blood tests, the results, the visit to the specialist, the confirmation of lupus, the prescription. According to Mrs. Hamilton, the specialist said that she had a "mild form" of lupus she has no major organ involvement, she has symptoms such as mouth ulcers, painful and swollen joints.
Medical experts say that the body's immune system (the defence against infection) turns against itself in cases of lupus and in the melee, immune cells attack different organ systems such as the skin, kidney, nervous system, musculoskeletal, blood, heart and lungs.
That Mrs. Hamilton had none of this major organ involvement was one big advantage, another one was a supportive boyfriend, now her husband.
"Well, actually I didn't know about lupus at the time but she said that it
wasn't something contagious and I didn't think it was something to stop me from marrying her. We were months into the relationship but after doing some research of my own and she telling me about the disease, I realised that it was treatable and if she sticks to the medication she would be okay," said husband Lynvale.
They were married in 1999, three years after her diagnosis, and they now have a two-year-old son, Daniel.
A major auditing and overhauling of Mrs. Hamilton's life was undertaken after the diagnosis. Along with the medication regimen, she, supported by her mother, implemented some lifestyle changes. First, she did her research on the disease; she told her family, friends, employers and work colleagues of her condition and received their support; she shifted her diet toward fruits and vegetables; she steams most of her food instead of frying them; she's allergic to fish but she sticks mainly to chicken and it's mostly boiled chicken that's on her plate. Another aspect of her life that she worked on was stress management.
"At the time I was in public relations and I was on the road a lot but my boss was aware of my condition and so she kind of readjusted my job function. I live in Portmore so I get up early, so I don't have to be in the traffic a lot and it is a big relief when I don't have to drive," Mrs. Hamilton said.
Now, seven years or so after diagnosis, Mrs. Hamilton is an active member of the Lupus Foundation of Jamaica and she's riding well, the ebb and flow of being a person living with lupus.
Lupus
self-screening questionnaire
Do you have lupus?
Have you ever had achy, painful and/or swollen joints for more than three months?
Have you ever had an unexplained fever of over 100 degrees for more than a few days?
Have you ever experienced persistent, extreme fatigue/exhaustion and weakness for days or even weeks at a time, even after six to eight hours of
restful sleep at nights?
Have you ever had sensitivity to the sun where your skin breaks out after being in the sun, but it's not sunburn?
Have you ever been told that you have a low blood count anaemia, low white cell count, or a low platelet count?
Have you ever been told you have protein in
your urine?
Have you ever had chest pains associated with breathing lasting for more than a few days?
Do your fingers and/or toes become pale, numb, or uncomfortable in the cold?
Have you ever had a prominent redness or colour change on your face, in the shape of a butterfly, across the bridge of your nose and cheeks?
Have you ever had a seizure or convulsion?
Have you had any sores in your mouth that lasted for more than two weeks?
If you answered 'yes' to at least three of these
questions, the Lupus Foundation of Jamaica
suggests that you talk to your doctor about lupus.
Source: The Lupus Foundation of Jamaica.
