Neurofibromatosis (NF-1): Terrifying tumour growth over the whole body

Neurofibromatosis (NF-1): Terrifying tumour growth over the whole body

Last Updated on April 24, 2024 by Joseph Gut – thasso

April 14, 2024 – There have recently been several media  publications along the lines like “Mom with ‘one-of-a-kind’ disease that causes tumors to grow over whole body terrified of dying alone” referring to a female patients out from the Jamaicas suffering from an extreme phenotypic form of the rare disease Neurofibromatosis (NF-1). The female patient concerned, Madam Charmaine Sahadeo, 42, from Chaguanas, Trinidad, is battling the rare condition of Neurofibromatosis (NF-1) which has caused tumours to grow on her scalp, in her mouth and across the rest of her body.

Neurofibromin 1 Gene (NF-1)

First of all, we should respect the courage of Madam Sahadeo for her courage to openly present her individual case/destiny around this terrifying and extremely rare disease. And secondly, we may want to learn what we talk about. Thus, Neurofibromatosis type I (NF-1), or von Recklinghausen Syndrome, is a complex multi-system human disorder caused by the mutation in the neurofibromin 1 gene (NF-1), a gene on chromosome 17 that is responsible for production of a protein (neurofibromin) which is needed for normal function in many human cell types. NF-1 causes tumors along the nervous system which can grow anywhere on the body. NF-1 is one of the most common genetic disorders and is not limited to any person’s ethnicity or sex for that matter. NF-1 is an autosomal dominant disorder, which means that mutation or deletion of one copy (i.e., allele) of the NF-1 gene is sufficient for the development of NF-1, although presentation varies widely and is often different even between relatives affected by NF-1. Thus, the many symptoms of NF-1 may include disfiguring cutaneous neurofibromas (CNF), café au lait pigment spots, plexiform neurofibromas (PN), skeletal defects, optic nerve gliomas, life-threatening malignant peripheral nerve sheath tumors (MPNST), pheochromocytoma, attention deficits, learning deficits and other cognitive disabilities.

Tumours all over.

In the case of Madam Sahadeo, we are talking about potentially dangerous tumours to grow all over her body, including her scalp, arms, legs, breasts, buttocks and genital area. She  struggles to breathe, eat, talk and walk due to her disease  and is terrified of dying alone as they (the tumours all over her body) could impact her ability to call for help. These terrible growths are making everyday life very hard for Madam Sahadeo; A cluster of tumors is almost completely blocking her nose, impacting her ability to breathe normally.


Another large tumour sits on her leg which makes it tough for Madam Sahadeo to walk even a few steps. To sit down or go to the bathroom, she has to move around the tumours. One particularly pesky tumor, which Madam Sahadeo has named ‘Frank’, lives in her mouth. Because of Frank, the brave mom finds it hard to eat and speak.

Severely disfiguring facial effects of NF-1 in a young patient.

Madam Sahadeo’s biggest worry is that, because she has so much difficulty already, she won’t be able to call for help if she can’t breathe anymore, and that she might die alone. Madam Sahadeo shared her fears in an episode of Take My Tumour on TLC, saying: “All the bumps are getting so big. I am afraid that if I cannot breathe properly I will die. I might not even be able to reach out to someone in time to tell them”.

NF-1 neurofibromatosis is due to a mutation in the NF-1 gene that controls cell growth and tumor prevention and affects about one in every 3,000 people across the world. The resulting tumors can be cancerous or benign. And although it’s possible for the disease to be inherited, 30 to 50 percent of those affected have no family history of it.

Unfortunately, there isn’t a real cure right now, except surgery. It was only  just in 2020 that FDA approved for the first time a medication for the treatment of NF-1 in children starting at age 2. Thasso at the time eluded in a blog to this event. The present  post largely is based on a publication from the MIRROR. All rights remain with the author and the publisher. See here also a sequence on the surgical options and treatment of that terrifying patient’s condition:



Disclaimer: Images and/or videos (if any) on this blog may be subject to copyright. All rights remain with the owner of these rights.

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Ph.D.; Professor in Pharmacology and Toxicology. Senior expert in theragenomic and personalized medicine and individualized drug safety. Senior expert in pharmaco- and toxicogenetics. Senior expert in human safety of drugs, chemicals, environmental pollutants, and dietary ingredients.

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