Hope for a lupus patient
Say this about Hope White.
For the last 20 years, lupus and all its complications have altered her life in devastating ways. But one thing remains constant: her parents named her right.
“They named me that for a reason,” White explained.
“Hope” is an understatement. Since her diagnosis, White, 44, has had one complication after another. As it is now, she takes 16 different medications, and is in and out of doctor’s offices almost every week.
Still, White considers herself blessed. She is still working as the manager for health and wellness programs at the YWCA Boston. She sits on eight community boards and has her hands full with a relatively new addition — a 20-month-old baby boy.
In her mind, her battle with one of the most mysterious diseases has been a good thing. “Lupus has opened a lot of doors for me,” she said.
It all started when White had recently graduated from Northeastern University. She was working two jobs to repay her college loans.
At first, she said, she thought she was simply tired from all the hours of work. She had other symptoms as well — aches and pains in her joints, fever and night sweats. But more than anything else, she was fatigued.
“I had to sit down to brush my teeth,” she recalled. “I thought it was a really bad case of the flu.”
Her condition got worse, and she finally went to the doctor about two months later. Their initial diagnosis was that she probably had mononucleosis — a common blood disease among young adults. She was given antibiotics.
When White’s condition persisted, doctors thought that she had Epstein-Barr virus, a very common affliction that can cause mononucleosis. She was told to eat vegetables, get plenty of rest and take vitamins. The doctors increased the dosage of antibiotics, but, again, the problems didn’t go away.
In fact, they got worse. Her joints began to swell. “My elbows actually locked and I was unable to extend my arm,” said White.
Now alarmed, White’s family took her to an emergency room and demanded answers.
“We’ll keep Hope here until you find out what’s wrong,” they told the doctors.
They tested her for everything under the sun, including HIV. One lone female doctor suggested they test for lupus. When the results of her antinuclear antibody test were positive, her doctors eventually confirmed the diagnosis — after a year of deliberation.
Lupus is a chronic autoimmune inflammatory disease that causes the body to attack itself. In healthy bodies, the immune system produces antibodies that ward off bacteria and viruses. But in patients suffering from lupus, the immune system cannot distinguish between healthy and bad cells. As a result, it attacks everything, including healthy tissues and organs.
There are several different types of lupus. The most common and serious form of the disease is systemic lupus erythematosus, commonly referred to as “lupus.” Other kinds include discoid lupus, which impacts just the skin and is characterized by a red raised rash on the face, scalp and other parts of the body; drug-induced lupus, caused by certain medications, which is reversed with discontinuation of the medication; and neonatal lupus, linked to the mother’s autoimmune disease, which usually disappears shortly after birth.
The cause of lupus is unknown, but theories abound on the reasons that incidences of lupus are higher in communities of color. Recent studies suggest that genetics and environmental factors play a major part.
One such recent study — the Roxbury Lupus Project — was conducted by experts at Brigham and Women’s Hospital in collaboration with the Women of Courage, a lupus support group, the Massachusetts Department of Public Health and investigators at the National Institute of Environmental Health Sciences. The purpose of the study was to test the theory that chemical wastes and other environmental factors prevalent in Roxbury, Mattapan and Dorchester might trigger the disease earlier than expected in people with certain patterns of genes.
Dr. Patricia A. Fraser was one of the experts who participated in that study. Fraser is the chair of the board of directors of the Lupus Foundation of New England.
The study did provide an estimate of how many people have lupus in Roxbury, Mattapan and Dorchester, but did not conclusively show a link between residential exposure to hazardous waste sites and lupus. Fraser explained that the study also increased awareness of lupus among the residents of these neighborhoods. This consciousness raising is essential — among providers as well as consumers.
“Get fully informed,” she said. “Especially if you have a family history of lupus.”
For White, the complications from her case of lupus are mind-numbing.
When she was initially diagnosed, doctors prescribed steroids to reduce the symptoms. They worked, but not without side effects such as weight gain and swelling in her legs.
Two years later, without warning, White learned she had another problem — hemolytic anemia, a condition that results from premature destruction of red blood cells. Her hematocrit, which measures the number and size of red blood cells, fell rapidly.
A low hematocrit indicates that the body is being robbed of much-needed oxygen. She was admitted through the emergency room and received a blood transfusion to restore her blood to normal levels.
The next lupus-related incident, or “flare,” caused minor kidney problems, a common consequence. Even now, she has her urine tested regularly to monitor the amount of protein — a strong indication of kidney dysfunction.
Then came yet another diagnosis. White already had the most common form of lupus. Doctors later determined that she also had discoid lupus, a less common type of the disease.
“I got rashes similar to [those of] eczema,” she said.
According to the Lupus Foundation of America, approximately 20-30 percent of patients with the most common form will develop discoid lesions at some time during the course of their disease.
But by now, doctors had determined that White also had a third form — bullous systemic lupus erythematosus — which is characterized by blisters that contain a clear fluid.
“I broke out in blisters from head to toe,” said White, who was hospitalized as a result.
Even treatments caused problems.
Chemotherapy, for instance, helped, but brought with it an unhappy side effect. It caused temporary osteoporosis and early menopause — what White calls “the most heartbreaking part of the disease.” The chemotherapy also led to bacterial meningitis.
It came on suddenly, as White recalls. “I went out to dinner and a movie, came home and woke up with a 105-degree fever,” she said. She was hospitalized for two weeks.
More problems followed. One time her blood pressure suddenly soared. “I saw colors of the rainbow everywhere I looked,” she said.
Again she went to the emergency room and, while being transported by wheelchair, passed out.
White is now in stage 5 renal failure. So far she has been able to escape dialysis, but had a shunt inserted for dialysis just in case. She is now on a transplant list.
In spite of all she’s been through, White said she keeps a positive outlook. And she falls back on her name.
“They named me Hope for a reason,” she said.
|Hope White, who manages the health and wellness programs at YWCA Boston, has lived with lupus for 20 years.
Hope White (left) shown with her 20-month-old son, Narai, has suffered many complications of lupus over the years. White is currently on a kidney transplant list.