MARIAM Nakyeyuneâ€™s world is falling apart. The 24- year-old graduate of computer science is a victim of social stigma. Since the age of three, Nakyeyune has been battling a strange skin disease.
In 2003, she developed an unquenchable thirst and urge to visit the toilet frequently. At a health facility, a test revealed her blood sugar was above normal â€” she was diabetic. â€œThe doctor advised me to go on a diet and also get medication. We had no money, so I was not treated,â€ Nakyeyune explains.
In 2004, her condition worsened. She went into a coma. Her mother narrated the ordeal to The New Vision and money was raised for Nakyeyune to be treated at Mulago Hospital.
â€œI was admitted for about two months. I could neither eat nor drink, so the doctors fixed a food tube through my nose,â€ she says.
However, after I regained consciousness, they realised my nose had broken because of the tube and the skin was tearing apart. It was agonising.â€
Dr. Andrew Hughes offered to perform free surgery on her and her nose was reconstructed. Three women who had learnt of her condition through The New Vision contacted Dr. David Ssali of Dama Herbal Clinic to give Nakyeyune medication for diabetes.
â€œI was given a variety of medicines, including herbal tea and motonerwa blood tona, a replacement for insulin,â€ she says. After taking the medication for about six months, Nakyeyuneâ€™s health improved.
But one thing that has shattered Nakyeyuneâ€™s self-esteem is her crooked nose and the rash which doctors have failed to treat. Her nose is deformed and has a darker complexion than the rest of her body.
The rash has spread all over her body. â€œMy hair stopped growing for about five years, but my mother took me to hospital and I was treated. The hair started growing again,â€ she says.
â€œMy skin itches. When I scratch, it swells and peels,â€ she explains. Her mother took her to Mulago. She says the doctors thought it was a skin rash which would cure. â€œThey prescribed an ointment and tablets, but the medication did not work.
Instead, blood and pus started oozing from my skin,â€ she adds. â€œDoctors suspected it was skin cancer, but tests ruled it out.â€ Nakyeyune went to Entebbe, Mengo and Nsambya hospitals. â€œThey prescribed the same medicine I had been given at Mulago.
The rash spread further to my chest and private parts,â€ she says. â€œMany people, including my boyfriend, abandoned me. At first he was helpful, but after the surgery, he could not bear my problems anymore.â€
At school, Nakyeyune could not associate with her peers. â€œI did not take part in drama or any school activity. I was dormant. I used to cover my entire body so that people could not see the rash,â€ she adds.
â€œI would run back home to scratch myself when the itching and peeling was unbearable. Throughout her secondary education, nobody knew she had the rash,â€ she says.
When Nakyeyune joined university, she opened up to her friends about the nose surgery. â€œBut I did not talk to them about the rash, although my short dresses soon gave me away,â€ she says.
â€œMany men have approached me wanting a relationship, but I have turned them down. They are interested in me, but they will not accept my condition. It has also hindered the progression of my career.
One time I applied for a job and I was called for an interview, but when the manager saw me, he said there was no job,â€ she says. â€œAnother time I got a job at a restaurant and was given a short uniform.
When the management noticed my legs were swollen with a rash and oozing with pus, they fired me,â€ she adds. â€œI need a new skin. I request Good Samaritans to come to my rescue. People cannot associate with me and the condition is getting worse.â€
She says at night or when it is very hot, her body itches severely and the skin peels. She uses Motivate Jelly to reduce the pain, but the skin still peels.
Dr. Paul Magomu, a skin expert at World Relief Medical Services International, says Nakyeyune may be suffering from an allergy that needs to be studied. â€œShe may be eating certain foods or chemicals that she is not supposed to eat.
Human beings develop different diseases due to a deficiency or exposure to certain chemical compounds. If the medical experts in different facilities she visited had taken time to study her illness, they could have come up with a diagnosis and cured the disease,â€ he says.
This could be a starting point for doctors who want to make a breakthrough.
Nakyeyune can be reached
â€˜My world is falling apartâ€™