Local teen defies all odds by living with rare disease two years longer than doctors predicted


Doctors told Musnoena Hamsa, 17, that she would not live for more than a year.

That was three years ago.

The teenager, from Eldorado Park, Johannesburg, suffers from a rare disease called desmoid fibromatosis. Desmoid tumors (fibromatosis) are rare benign tumours. They occur in six out of every one million people a year.

Musnoena has a desmoid tumour in her neck.

PHOTO: Lerato Sejake, News24 PHOTO: Lerato Sejake, News24

"Doctors told me that there is nothing they could do for me. I had to find strength within to overcome this," Musnoena told News24.

Musnoena has tried to commit suicide three times after she was diagnosed.

"I lost hope and went into depression. I realised that I have to live my life to the fullest, because there are people going through far worse than me."

The girl with the soft smile has a younger brother and older sister. She says she has learnt to put everything in God’s hands. She stays positive by reading the Bible and finds strength in prayer.

She describes herself as a funny person who enjoys joking with her family and friends. Musnoena has had to make peace with the fact that people treat her differently because of her illness.

"I know that I am sick, but I want people to treat me like a normal human being." Her mother Chantelle, 38, is her biggest motivation and inspires her the most.

"To see your child going through so much pain is not a nice thing for any mother. I try to uplift her where I can on days when she is very down. I need to remind her that there is still a long way to go."

She found it hard to cope when her daughter was diagnosed.

"At first it was very hard and stressful and I used alcohol as an escape. I had to remind myself about my other children as well. If she had to pass away, I would know that I have other children too."

The family is hopeful that doctors will find a cure for her. "It is obstructing the body and it is life-threatening, because doctors can’t operate there."

Chantelle designs and sells bracelets to raise funds for Musnoena. "The bracelet money was to have taxi fare and to buy food. We don’t have anyone that supports us."

Musnoena’s dream of becoming a fashion designer and model faded after she was diagnosed. Now she hopes to become a forensic scientist to help people like her. She also wants to explore the world.

"I really want to go to Paris, but first I want to see the beauty that South Africa has to offer."

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Source: News24

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