A “heartbroken” woman fears she may never find love or walk again due to a tumour the size of a basketball on her leg.
Jannely Boumpoutou is afflicted with the rare condition NF-1 neurofibromatosis, which has resulted in three large tumours on her right knee, calf and backside, as well as numerous smaller lumps across her body.
The 35-year-old, who was diagnosed with the condition just before her tenth birthday, admits she’s spent years feeling self-conscious, ashamed and “afraid” to socialise due to the judgemental stares of strangers. For the past three years, Jannely has been reliant on a wheelchair after her tumours grew larger. Now, Jannely resides in a bungalow as she’s unable to climb stairs.
Unable to wear trousers because of the basketball-sized tumour on her leg, Jannely has been compelled to wear long skirts to conceal the growths.
Jannely believes her disability is preventing her from “living the life she was supposed to live,” as she’s unable to secure employment and fears she may never be able to start a family. The enormous lumps cause Jannely difficulty when putting pressure on her right side, leading to scoliosis and making it challenging for her to use her wheelchair.
Jannely alleges doctors have warned her it’s too risky to remove the tumours as she could lose her entire leg. A GoFundMe page has been started by a friend to help cover costs of specialist rehabilitation and physiotherapy, medical treatments and transport to ongoing appointments.
Now, Jannely is keen to raise awareness about the disease and emphasise “not every condition is the same”. Jannely, a resident of Wandsworth in South West London, has 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.”
Jannely added that the condition has left her unable to find a job despite her search for one. She said: “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 tumour on my leg is] the size of a basketball.”
Jannely, who relies on pain medication, stated that doctors are reluctant to perform surgery on her due to the high risk of cutting a vein in her leg.
While her tumours are benign, she revealed that doctors are concerned about the possibility of them spreading or turning cancerous in the future. She’s currently investigating herbal remedies in a bid to naturally shrink 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.”
Jannely now hopes to raise awareness about her rare condition and its varied effects on sufferers, while championing further research into the illness. 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.”
She added: “It feels like I’m not doing enough for them.” You can donate to Jannely’s GoFundMe page here,