A woman with a rare disease that causes thousands of life-threatening tumors to grow throughout her body traveled 4,000 miles to undergo surgery to remove the growths that would allow her to breathe, eat, talk and walk.
Charmaine Sahadeo, 42, from Chaguanas, Trinidad, suffers from the rare disease neurofibromatosis NF-1.
Mrs. Sahadeo has growths on her scalp, in her mouth, all over her face, arms, legs, buttocks, breasts and in her genital region.
The tumors almost completely block his nose, making it almost impossible for him to breathe.
A large mass on your leg means you cannot walk more than a few steps at a time and must adjust the lumps to be able to sit up and urinate.
A tumor growing in her mouth, which she named ‘Frank’, makes it difficult for the mother of two to eat and speak.
Due to her debilitating condition, Mrs Sahadeo’s greatest fear is that she will not be able to breathe or call for help and ultimately die alone.
She said on the most recent episode of TLC’s Take my tumor: ‘All the potholes are getting very big. I’m afraid of dying if I can’t breathe properly. I might not even be able to get through to someone in time to tell them.’
Charmaine Sahadeo from Trinidad, suffers from neurofibromatosis NF-1, a rare condition that causes tumors to form throughout the body.
The Trinidad native began developing tumors when she was 13, but they were smaller and less intrusive.
Approximately one in 3,000 people worldwide suffer from neurofibromatosis NF-1, also known as von Recklinghausen disease.
Mrs. Sahadeo’s case is extremely serious and there is no cure.
The condition occurs due to a mutation in a person’s NF-1 gene, which regulates a protein that plays a role in cell growth and is thought to be a tumor suppressor. The tumors that grow can be both cancerous and non-cancerous.
In addition to the growths, neurofibromatosis can cause an abnormally large head, short stature, heart problems, seizures and learning problems, although Sahadeo did not discuss these issues on the television show.
Although it can be passed from parents to children, between 30 and 50 percent of people who suffer from the disease have no family history.
Sahadeo’s mother has neurofibromatosis NF-1, although she said it is not as severe as hers.
The disease has impacted every aspect of his life. She never learned to drive, she can’t wear clothes that fit well and she can’t go out in public places without being booed.
She said: “This condition is very difficult because people just like to stare and then have all sorts of negative things to say.”
The tumors are invading his eyes, giving him blurry double vision and he can’t play with his granddaughter.
Mrs. Sahadeo added: “It hurts me a lot that I can’t be outside playing with her.” I wish I could take her and just walk a couple of houses, (but) since she was born I haven’t had that experience.’
The 42-year-old woman has to wear loose clothing to cover her large tumors.
Seeking relief, Ms. Sahadeo discovered Dr. Ryan Osborne, a Los Angeles-based head and neck surgical oncologist and director of the Osborne Head and Neck Institute.
Despite all her challenges, Sahadeo’s children said she never complains. Neither her children nor her granddaughter have shown signs of NF-1 neurofibromatosis, but the disease can occur at any time in a person’s life.
“So far everything is going well and I continue to pray for them,” he said.
The Trinidad native began developing tumors when she was 13, although they were smaller and less intrusive. She only had “a couple on her face,” but now she has “thousands” all over her body.
Doctors in Mrs. Sahadeo’s home country have been unable to help her because her condition has worsened.
Seeking relief, Ms. Sahadeo discovered Dr. Ryan Osborne, a Los Angeles-based head and neck surgical oncologist and director of the Osborne Head and Neck Institute.
Mrs Sahadeo said: ‘All I ask for is a little relief. I want my face to clear up so I can see and breathe properly and not have problems with my mouth.
‘The doctors never said before that they could help or do anything. Now that I finally have the chance and have a doctor who is willing to help, I am willing to go all the way.
“I’m putting my faith in this doctor because he is my last hope.”
“Going all the way” means flying nearly 4,000 miles to California to meet with Dr. Osborne.
And when the surgeon first heard about Mrs. Sahadeo’s case, he knew he had to help her.
Dr Osborne said: “When most doctors see a patient and it’s a complex situation, they just see a high risk.” I see the opposite of that, which is high impact.
‘It’s an opportunity for me to have a big impact on that patient’s life. I went into medicine to help people.
“Once I make a human connection with a patient, I have no choice: I’m going to take the case.”
Dr Osborne said it was “trespassing into dangerous territory” and added it was “urgent at this time that we intervene”.
While preparing for surgery, the medical team could not find a vein to infuse anesthesia because of all the tumors.
The oncologist has been in practice for more than two decades and said patients come to him from all over the world because of his experience and low complication rate.
He described Ms Sahadeo’s case as “extensive” and “unusual”.
The doctor said: ‘You have an unusual presentation of neurofibromatosis. It’s literally everywhere. Personally, I have never seen a patient clinically, and I have never seen one in a textbook, who has it as bad as Charmaine. She seems unique to me.’
Due to the severity of his neurofibromatosis, Dr Osborne said he is “trespassing into dangerous territory”, adding that it was “urgent at this time that we intervene”.
However, removing the thousands of tumors would be a long and complicated process, requiring multiple surgeries over more than two months.
He explained to Sahadeo that with every tumor he removes, he also removes pieces of skin. Removing too much increases the risk of infection, so the procedures must be done in several sessions.
How quickly they can act depends on how much pain the patient can tolerate.
Dr Osborne said: “You won’t feel anything during the surgery.” It’s when you wake up. If I took all this away from you, it would be like someone skinning you alive and couldn’t give you enough painkillers to keep you comfortable.
Despite the pain, Mrs. Sahadeo was determined to undergo surgery.
Mrs. Sahadeo underwent 60 hours of surgery in total and the doctor was able to remove hundreds of tumors.
The photo on the left shows Ms. Sahadeo before her surgeries and the one on the right shows her after more than 60 hours of operations.
Dr Osborne told his patient: ‘I’ve never done this before…. Let’s do this together, step by step. The only thing I can tell you is that I will be here with you all the time and whatever happens we will figure it out.’
He added: “This is just a once-in-a-lifetime opportunity to meet someone who has the potential to have a real impact on your life, and it’s scary because, like the other doctors, they didn’t want to get involved because they’re just not there.” I’m sure they can really make a big difference here, but I’m not sure either.
“But I’m absolutely sure I’m willing to try.”
In preparing for surgery, Sahadeo’s medical team ran into a major obstacle: Her tumors covered much of her body, they couldn’t find a vein to infuse her with anesthesia, which meant they couldn’t sedate her for surgery.
Opting to administer local anesthesia, numbing only the affected area rather than sedation, Ms. Sahadeo underwent a 13-hour surgery fully awake.
Dr. Osborne was able to remove dozens of tumors, including several large ones in his face and ‘Frank’ in his mouth, as well as the extremely large tumor in his leg.
Over the next 10 weeks, he operated on Mrs Sahadeo 24 times, for a total of 60 hours.
Dr. Osborne was able to remove more tumors than she expected and said, “Life is 100 percent better for me.” I love the way I look now.
Ms. Sahadeo said she feels 98 percent better than before the procedures and smiles more now.
Four weeks after her last surgery, back in Trinidad, Mrs Sahadeo said: “Life is 100 per cent better for me.”
Dr Osborne was able to remove more tumors than she expected, adding: “I love the way I look now.
‘Before I couldn’t see anything at all, like my face, but now you can see my eyes naturally. You can see my nose. You can see my mouth. I can see properly and, most importantly, I can breathe much better.’
Sahadeo said he feels 98 percent better than before the procedures and smiles more now. Once the tumor is removed from his leg, he can walk and play with his granddaughter.
She said: ‘I feel beautiful. I really feel beautiful now. I feel fantastic. I came back a different person. I can’t expect anything better.’
