A Trinidad-based woman traveled 4,000 miles to treat a rare disease called NF-1 neurofibromatosis, a rare condition where tumor growths develop on scalp, mouth, face, arms, buttocks, legs, breasts, and even on genitals.
The woman named Charmaine Sahadeo said that the tumor growths on her various body parts are preventing her from eating, walking and talking properly.
She shared her fears in TLC’s latest episode of Take My Tumor by saying that, “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.”
She added, “This condition is very hard because people just like to stare and then have all kinds of negative things to say.”
Sahadeo’s condition, also known as von Recklinghausen’s disease, affects around one in 3,000 people across the world. It is a result of a mutation on a person’s NF-1 gene, which regulates a protein that effects cell growth and also suppresses tumor.
In addition to tumor growths, the condition could also cause an abnormally large head, short stature, heart problems, seizures and learning disabilities.
While battling with her condition, Sahadeo came in contact with Dr Ryan Osborne, a head and neck cancer surgeon based in Los Angeles and the head of the Osborne Head and Neck Institute.
After examining Sahadeo, Dr Osborne said that she is “encroaching on some dangerous territory,” and added that it was “urgent right now that we intervene.”
Later, Dr Osborne performed 24 surgeries for a total of 60 hours over 10 weeks and managed to remove dozens of tumors.
Post-surgery, Sahadeo positively remarked, “I feel beautiful. I really do feel beautiful now. I feel fantastic. I came back a different person. I cannot expect anything better.”
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