Jannely Boumpoutou, a 35-year-old woman from Wandsworth, London, says she fears she will never find love or start a family due to a basketball-sized tumour on her leg caused by the rare condition NF-1 neurofibromatosis. Diagnosed at age nine, she has three large tumours on her right knee, calf, and buttock, along with numerous smaller lumps across her body.
Living with the condition
Jannely has used a wheelchair for the past three years as the tumours grew larger. She lives in a bungalow because she cannot climb stairs. Unable to wear trousers, she relies on long skirts to hide the growths. The tumours cause her difficulty putting weight on her right side, leading to scoliosis and making wheelchair use challenging.
Doctors have deemed surgery too risky, as removing the tumours could result in losing her leg entirely. A GoFundMe page set up by a friend aims to cover specialist rehabilitation, physiotherapy, medical therapies, and transportation to ongoing treatment. Jannely is also exploring herbal treatments to naturally reduce the tumour size.
Impact on life and relationships
Jannely says her disability prevents her from living the life she wanted. She cannot work and fears she may never start a family. She stated: "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."
She has faced stares and judgment from strangers, which made her self-conscious and ashamed, especially when she was younger. She said: "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."
Medical risks and future fears
While the tumours are benign, doctors fear they could become cancerous or spread. 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." She takes pain medication and hopes for a future where the tumours can be removed, allowing her to undergo rehabilitation.
Awareness and research
Jannely wants to spread awareness about NF-1 neurofibromatosis, noting that it affects everyone differently. She said: "This condition affects everyone differently. I've never seen anyone affected as much as I am." She also highlights the need for research, especially in rural areas where access to information is limited. "Research is important for the condition and how it affects everyone, including family members as well as the person who has it," she added.
Neurofibromatosis type 1 is a genetic condition causing tumours on nerves and skin. There is no cure, but treatment can manage symptoms. Severity varies based on tumour location and size, and the condition usually worsens over time, with a risk of some tumours becoming cancerous.
