‘I am strong and want to the best I can be’ – London student living with neurofibromatosis

By Shaun Flores
December 15 2019, 10.25

A London physiotherapy student wants to ‘be the best he can be’ and to raise awareness of the rare genetic disorder he lives with.

Malcolm Boumpoutou, 26, found out he had neurofibromatosis early in his childhood.

Malcolm said: “People who suffer from the condition I have usually are unknown, as diseases such as cancer are more well known. In school I was bullied, because people did not understand.

“Life with neurofibromatosis can be tough, but I keep going, I am strong and want to the best I can be.”

From a very young age Malcolm knew something was different.

He said: “I asked my mum what is wrong with me? She said nothing, then she explained to me I had neurofibromatosis.”

Neurofibromatosis is a genetic disorder that causes tumors to form on nerve tissue. These tumors can develop anywhere in the nervous system, including the brain, spinal cord and nerves.

The tumors are usually benign but sometimes can become cancerous (malignant).

Malcolm continued: “There are nights I am unable to sleep due to the severe pain, and in the last couple of years the tumour on my leg has grown. I decided to go through surgery. I am on the waiting list and I am nervous.

“It can either make my leg better or it could come back worse.”

Neurofibromatosis 1 (NF1) is a common genetic condition that causes nerve tumours to grow where they shouldn’t. The ‘spelling mistake’ in the gene is found on chromosome 17 and occurs in 1 in 2,500 of the population. There are approximately 25,000 people in the UK diagnosed with NF1.


Malcolm said: “My sister suffers from it worse than me, she is in a wheelchair, she had surgery and the surgeon touched something wrong and it grew massively resulting her to being in a wheelchair.

“My mum has the gene, we got it, it skipped all her siblings. I have it and my brother does not have it at all.

“Through studying physiotherapy, I have begun to understand more about my leg, and the nerves surrounding it, which helps me to not trigger or put my leg through pain.

“I hope my story inspires others to know about neurofibromatosis.”

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