How a girl lost her skin to an allergy

In her teenage years, a girl becomes more aware of her physical appearance. It is a time when she begins to wonder if she is beautiful enough to earn a second glance as she walks down the street.
In this quest for confirmation of beauty, the skin condition plays a vital role in making or breaking one’s confidence.

In Pearl Mukisa’s case, what began as a mild fever ended with her losing her entire skin.
In January 2009, when she was in Senior Four, at Mbogo Mixed Secondary School in Kawanda, Wakiso, Mukisa suffered a bout of fever.

Medical puzzle
“It was on and off,” recalls her mother, Florence Katawera adding that, “she also developed abdominal pain. When her condition worsened, I took her to Mulago Hospital, where blood tests and an abdominal ultrasound showed no sign of illness.”

Visits to other clinics failed to diagnose why Mukisa’s illness was recurring. By August, her skin had turned yellowish.

“Doctors in Mulago hospital told me that my daughter’s liver had developed complications, which had caused her skin to change colour. They prescribed medication but we also bought herbal supplements.”

After the treatment, Mukisa’s skin colour returned to normal and she returned to school. Her ordeal was not over, though.

At the beginning of 2013, Katawera says, her daughter developed a rash in both armpits.
“The rash appeared in clusters and by the end of the day they looked like blisters – like the skin had been burnt. These blisters had “water” in them, which we let out by piercing them.”

The punctured blisters developed into big wounds, and the rash spread to the entire body. When it appeared on Mukisa’s buttocks, she was forced to abandon school, again, because she could not sit.

“The wounds caused the skin to peel off and her hair and nails fell out. At Mulago, the nurses were scared of touching her but I do not blame them. In the morning, I would sponge the front of her body and place small plasters worth Shs10,000, all over her body. In the evening I would turn her over and wash the other side. The blood-soaked plasters would just fall off her body.”

The doctors at the Skin Clinic were treating Mukisa as a third-degree burns patient. They only placed her on a drip of water and discharged her when the wounds became septic.

Katawera took her daughter to a clinic near home where a doctor prescribed an injection that would dry up the wounds.

A few minutes after the injection, the skin on her face broke up in blisters. The mother resorted to herbal medicine.
“I bought and cooked the leaves, and gave my daughter to drink. After two days, the raw wounds began drying.”

However, the girl became anaemic and had to be admitted to Mulago, discontinuing the herbal treatment.

“This time, after many doctors checked her, we were told Pearl is allergic to sulphur. Most of the drugs she had been taking contained the chemical. But we were not given any treatment.”

They were later referred to Mengo Hospital when a wound on Mukisa’s neck caused a blood clot in a vein connected to her left eye.
An operation was scheduled but the surgeons told Katawera that Mukisa would not regain her eyesight.

Mukisa confirms that she regained about ten per cent functionality in that eye after four operations. During the interview, she has a lesu covering her head and face, to keep out the light. It makes her dizzy.
When the weather is cold, the dizziness can cause her to faint. On the other hand, when it is hot, her body itches.

“After the operations, wherever I heard of skin doctors, I took my daughter there. I even went as far as Nyenga Hospital.”

Previously, St Francis hospital in Nyenga, Buikwe District, was the national referral hospital for skin complications before the services were decentralised.

However, with the right diagnosis, the search for treatment narrowed down to ointments and drugs free of Sulphanilamide, a Sulphur-containing chemical used in many drugs. Mukisa’s wounds dried up and a new, fragile skin began to grow.

The cost of health
Katawera owned a secretarial bureau in Makerere University Business School (Mubs) but with the increasing cost of treatment, she closed it running it became unprofitable.

“Pearl’s father was working in Dairy Corporation but he left to start his own business, but it also collapsed and he returned to the village,” she says, adding, “he does not send us money because he does not have a job.”

Seeking new opportunities
With a new skin, Mukisa felt confident enough to return to school. In May 2014, she enrolled for Senior Five at Namboole High School, but her poor health soon forced her out.

In January this year, Mukisa, who is now 22, opened a secretarial bureau in Nakawa, but two weeks later, she contracted malaria and was given Coartem medication.

But because she was not hydrated, the drug corroded her skin and the scars that had healed became wounds again.

She is nursing a deep wound – through which the bone can be seen – on her left foot.

“Nowadays when she gets malaria I treat her with ekigagyi (aloe vera),” says Katawera. “Cleaning that wound is a problem because it is so painful. She insists on cleaning it herself, but she cannot do it well, so I have to do it by force.”

Mukisa says she suffers from general weakness. “I cannot do housework but what hurts me most are the discriminating looks I get from people. They do not want to be near me. They think I am abnormal,” she says.

With no money for treatment, Mukisa and her mother will likely retire to the village to manage the complicated skin condition as best as they can.

Skin reaction explained

Stevens Johnson Syndrome (SJS) occurs when a person is allergic to a particular drug, causing their skin to peels off.
For some people, it may be ARVs or drugs containing sulphur.

“Anybody can get SJS depending on their liver’s predisposition to detoxify the drug, but reaction to Sulphur is the commonest complication in the syndrome,” says Dr Edward Ogwang, a dermatologist at The Skin Clinic.
Dr Malik Ssempereza, a dermatologist at Unity Skin Clinic says reactions to sulphanilamides are not as common as they are presumed to be.

“It’s just that some of the popular drugs we were using are sulphur-based drugs such as Septrin, Metakalfin, and Fansidar.”
In the extreme form of Stevens Johnson Syndrome, the patient can develop Toxic Epidermal Necrolysis (TEN), which is often life-threatening.

TEN causes the top layer of the skin to peel off in sheets, leaving the body open to infections.
Although there has been no conclusive research, Dr Ssempereza says that genetics have a minor role to play in SJS.

“There has to be a reason why some people are hypersensitive to drugs and others are not. You can only put it down to genes that can or cannot handle the components of a drug.”

“Genes help to develop the enzymes in the liver that have to destroy the toxic component in a drug,” says Dr Ogwang.

He adds that once one notices abnormal signs on their skin while they are on medication, they should stop taking the drug immediately.
“SJS can be resolved within three weeks.

However, if the condition advances to toxic epidermal necrolysis, then it becomes very severe. The damage to the skin is irreversible,” says Dr Ssempereza. “The caregivers have to manage the patient so that they do not develop infections. Septic wounds are fatal.

Since there is no skin to protect them, their body temperature should be well managed to prevent loss of fluids.”

“The only treatment is to admit them to the Burns Unit and keep them hydrated because without skin, the body fluids evaporate easily,” says Dr Ogwang.

The treatment culture is basically supportive for example giving intravenous fluids and feeding.

There is no medication that one can take to reverse TEN.

In Mukisa’s case, she only eats fresh foods because some preservatives contain sulphur.

“The mortality rate for TEN is really high, at 30 percent,” says Dr Ogwang.

“People usually die as a result of poor management of wounds. When they become septic, it can lead to multiple organ failure,” he adds.