Jannely Boumpoutou struggles to walk due to the tumours on her body, which started appearing when she was nine years old
A ‘heartbroken’ woman fears she’ll never find love or walk again – due to a basketball-sized tumour on her leg. Jannely Boumpoutou suffers from the rare condition NF-1 neurofibromatosis, which resulted in three large tumours on her right knee, calf and bum cheek as well as several tiny lumps on her body.
The 35-year-old, who was diagnosed with the condition at just nine years of age, says she’s spent years feeling self-conscious and ashamed and ‘afraid’ of socialising due to judgemental strangers’ stares.
Jannely has relied on a wheelchair for the last three years after her tumours grew bigger and lives in a bungalow as she can’t climb the stairs. Unable to wear trousers due to the basketball-sized tumour on her leg, she’s forced to wear long skirts to hide the growths.
Jannely says her disability is stopping her ‘living the life she was supposed to live’ as she can’t get a job and might never be able to start a family. The huge lumps mean Jannely struggles putting pressure on her right side, which has given her scoliosis and makes using her wheelchair difficult.
Jannely claims doctors have said it’s too risky to remove the tumours because she might lose her leg entirely. A GoFundMe page has been set up by her friend to cover specialist rehabilitation and physiotherapy, medical therapies and transportation to ongoing treatment.
Now Jannely wants to spread awareness about the disease and highlight that ‘not every condition is the same’. Jannely, who lives in Wandsworth, said: “This condition affects everyone differently. I’ve never seen anyone affected as much as I am.
“It’s really heartbreaking because I wanted to live my life, get married and have kids. It put a whole pause on my situation to the point where if I did have a family I’d have to alert doctors.
“All I remember is that I used to have difficulty walking when I was younger. I wasn’t really bothered about it until I was about 18. I really started to acknowledge my disability as a disability and I realised my life would be quite different from others.
“It affects my life a lot. Usually by this age I’d be working but I can’t really get a job even though I have looked. Growing up I have had people staring. If I’m out by myself I do get stares but I try to phase them out in a way. It’s made me self-conscious and ashamed, especially when I was younger I didn’t like going out.
“Before I was so self-conscious and closed off and didn’t want to go out or socialise, I was afraid of people’s judgements and what they might think.
“It makes it hard to find things that fit properly so I usually stick to shirts and tops. Growing up I did wear trousers but they had to be really big sizes and it weighed a lot on my leg. It’s the size of a basketball.”
Jannely, who takes pain medication, claims doctors won’t carry out surgery as there’s a high risk they could cut a vein in her leg. While her tumours are benign, she says doctors fear the tumours spreading or becoming cancerous in future. She is currently exploring herbal treatments to try and naturally reduce the size of the tumours.
Jannely said: “I’m afraid the tumours will worsen over time. The risk of the tumours becoming cancerous and spreading is what the doctors are scared of, it’s a real fear for me as well.
“It’d be amazing to have those tumours removed because then I’d be in rehabilitation. I’m looking forward to that part more than anything else if it were to happen. I do want to be able to work and help my family out and live the life I was supposed to live.”
Now Jannely hopes to spread awareness about her rare condition and how it affects people differently as well as promote more research on it.
Jannely said: “I live here in London where there actually is research. People in rural countries may have it but that research doesn’t reach them, which is hard. Research is important for the condition and how it affects everyone, including family members as well as the person who has it.
“My parents and my brothers care about me and want to do everything for me and then it feels like I don’t do anything to show that I appreciate them. It feels like I’m not doing enough for them.”
You can donate to Jannely’s GoFundMe page here
WHAT IS NEUROFIBROMATOSIS TYPE 1?
Neurofibromatosis type 1 is a genetic condition that causes tumours to grow on the nerves and skin. While there is currently no cure, treatment can help you to manage the symptoms. The severity of your symptoms depends on where the tumours are located and their size and this can change over time. Symptoms can include light brown patches of skin, lumps on or just under your skin, a large head and below average height, learning difficulties and eye problems.
The life-long condition usually gets worse over time and there is a risk some tumours can become cancerous.
