Teen living with rare autoimmune disease

Marvel Wangui was diagnosed with Behcet’s disease, a condition that causes inflammation in blood cells last year

At first glance, Marvel Wangui looks like any other teenage girl. She is a studious girl, oozing confidence. It is only when you look closely and   listen her story that you realise all is not as it should be.

Wangui’s journey of endless health complications began as soon as she was born. First, she was diagnosed with severe jaundice, a condition in which the skin and whites of the eyes become yellow. The condition was so severe that at just two weeks old, she went through an exchange transfusion, a medical procedure, where her blood is removed and replaced with donor blood.

The procedure resulted in weakness and infections throughout her infancy. When she was eight years old, and in Class Three, she went through two operations to correct an eye problem and another one to remove tonsils and adenoids. That year she never went to school.

Soon after, Wangui began having flu- like symptoms, which kept recurring for weeks, pain in her joints, pain all over her entire body, fevers and other complications. Her parents thought it was a bad flu, but the conditions got worse. The inflammations instead moved from the mouth to the eyes and then her genitals.

For almost a decade, Wangui suffered pain unlike she had ever experienced before. Blood tests, scans and the list goes on and on. Every specialist had different tests to run.

“I can no longer count on one hand how many specialists and doctors we have seen or how many miscellaneous, random, elevated or low tests have come back that get back to us with no explanation,” says Wangui’s mother, Timina Mwangi. One doctor suspected a protein allergy, and Wangui was denied all foods rich in protein and wheat for years, although it never seemed to work.

It wasn’t until last year that she was diagnosed with Behcet’s disease, a rare disorder causing inflammation in blood vessels by a trainee rheumatologist at Aga Khan Hospital.

“We were traumatised. This is a disease, whose cause and cure is not known,” Timina recounts.

Embarking on a new treatment plan, was one of the most difficult periods for Wangui and her parents.

“I remember the doctor introducing us to medication, but gave a stern caution about their adverse side-effects,” she says.  They started with Predisole steroid, Azathioprine, Cortisone and then Azarsan. She takes medicine on a daily basis.

The treatment, however, is only meant to suppress the symptoms but not treat it and it is expensive. “We have spent millions of shillings seeking treatment, buying drugs, conducting tests and yet there is no much improvement. The doctor feels that we should change from the Azathioprine to another immune-depressant known as infliximab, which costs Sh70,000 every month,” says Timina. 

Predisole steroid is a short-term treatment. The purpose is to suppress the immunity, which leaves her vulnerable to other infections. She also gets depressed from time to time.

Meanwhile, Wangui has missed so much in her education. First, due to the effect that the disease has on her brain, which causes forgetfulness as well as missing classes for getting sick all the time.

“I also have had to deal with psychological issues of a battered body image and inability to do the things I wanted to. I cannot go out with my friends because I cannot do what they do. And when I go to school, it is difficult to keep up with the others,” says Wangui.

It is only with a good deal of determination that she has been able to navigate through her education and next year, God willing, she will be sitting for her Kenya Certificate of Secondary Education.

“This condition, with its complex manifestations, is an invisible disability, and I find it very difficult to get people, especially my teachers and friends in school, understand the levels of pain I face each day and treat me with empathy,” she retorts.

However, she has been able to accept it and make suitable modifications to her lifestyle to manage the situation.

The family is making plans for an appointment in October at John Hopkins Hospital for tests that they hope will lead to better control of Wangui’s condition.

They are conducting fundraiser through the paybill number 222911 to enable them raise Sh4.5 million for  further evaluation and testing on the disease.

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