Woman’s ‘unique’ disease causes thousands of TUMORS to grow all over her body, including in her nose and mouth

A woman with a rare disease that causes thousands of life-threatening tumors to grow all over her body has traveled 6,000 miles for surgery to remove the growths that have allowed her to breathe, eat, talk and walk.

Charmaine Sahadeo, 42, from Chaguanas, Trinidad, suffers from the rare condition NF-1 neurofibromatosis.

Ms Sahadeo has growths on her scalp, in her mouth, all over her face, arms, legs, buttocks, breasts and on her genitals.

The tumors almost completely block her nose, making breathing almost impossible.

A large mass on her leg prevents her from walking more than a few steps at a time and requires her to adjust the lumps to sit and urinate.

A tumor growing in her mouth – which she named “Frank” – makes it difficult for the mother of two to eat and talk.

Due to her debilitating condition, Ms. Sahadeo’s greatest fear is that she will no longer be able to breathe or call for help, and will ultimately die alone.

She said on the latest episode of TLC Take my tumor: ‘All the bumps get so big. I’m afraid that if I can’t breathe properly, I will die. I might not even be able to reach someone in time to tell them.”

About one in three thousand people around the world suffer from NF-1 neurofibromatosis, also known as von Recklinghausen disease.

Ms Sahadeo’s case is extremely serious and there is no cure.

The condition occurs because of 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 either cancerous or non-cancerous.

In addition to growths, neurofibromatosis can lead to an abnormally large head, short stature, heart problems, seizures and learning disabilities, although Ms Sahadeo did not discuss these on the TV programme.

Although it can be passed through families, about 30 to 50 percent of people who have the disease have no family history of it.

Ms. Sahadeo’s mother has NF-1 neurofibromatosis, although she said the disease is not nearly as severe as hers.

The disease has affected every aspect of her life. She never learned to drive, cannot wear properly fitting clothes and cannot appear in public without being harassed.

She said: ‘This condition is very difficult because people just want to stare and then have all kinds of negative things to say.’

The tumors are invading her eyes, causing double and blurred vision and preventing her from playing with her granddaughter.

Ms Sahadeo added: ‘It hurts a lot not to be able to play with her outside. “I would love to take her and walk a few houses away, (but) I haven’t had that experience since she was born.”

Despite all her challenges, Mrs. Sahadeo’s sons said she never complains. Neither her sons nor her granddaughter showed 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,” she said.

The Trinidad native first started developing tumors when she was 13 years old, although they started out smaller and less invasive. She only had “a few on my face” but now has “thousands” all over her body.

Doctors in Ms Sahadeo’s home country were unable to help as her condition worsened.

In search of enlightenment, Ms. Sahadeo discovered Dr. Ryan Osborne, a Los Angeles-based head and neck surgical oncologist and director of the Osborne Head and Neck Institute.

Ms Sahadeo said: “All I’m asking for is a little relief. I want my face to clear up so I can see and breathe well and not have any problems with my mouth.

‘Doctors have never said before that they could help or do anything. Now that I finally have the opportunity and I have a doctor who is willing to help, I am willing to do whatever it takes.

“I trust this doctor because this 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 of Ms. 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, all they see is high risk. I see the opposite of that, which is high impact.

“It’s an opportunity for me to have a huge impact on that patient’s life.” I went into medicine to help people.

“Once I build a human connection with a patient, I no longer have a choice: I’m going to take the case.”

The oncologist has been in practice for more than 20 years and says patients come to him from all over the world for his expertise and low complication rate.

He described Ms Sahadeo’s case as “extensive” and “unusual”.

The doctor said, ‘She has an unusual form of neurofibromatosis. It’s literally everywhere. I’ve never personally seen a patient clinically, and I’ve never seen one in a textbook, I have it just as bad as Charmaine. She seems to me to be one of a kind.’

Due to the severity of her neurofibromatosis, Dr. Osborne said she is “entering dangerous territory,” adding that it is “urgent now that we act.”

However, removing the thousands of tumors would be a complicated and lengthy process, requiring multiple surgeries over more than two months.

He explained to Mrs. Sahadeo that with every tumor he removes, he also removes pieces of skin. Removing too much increases the risk of infection, so the procedures should be performed over several sessions.

How quickly they can work depends on how much pain the patient can tolerate.

Dr. Osborne said: ‘You won’t feel anything during the operation. It’s when you wake up. If I were to remove all of this, it would be like someone skinned you alive and I couldn’t give you enough painkillers to keep you comfortable.”

Despite the pain, Ms. Sahadeo was determined to undergo surgery.

Dr. Osborne told his patient, “I’ve never done this before…. We’re going to do this together, step by step. All I can tell you is that I will be here with you all the way and no matter what happens, we will figure it out.”

He added: ‘This is just a once-in-a-lifetime opportunity to meet someone who you have the potential to really impact their life – and it’s scary because, like the other doctors, they didn’t want to get involved , because they just aren’t. I’m sure they can really make a big difference here, I’m not sure either.

“But I’m absolutely sure I want to try.”

In preparing for the surgery, Ms. Sahadeo’s medical team hit a major roadblock: Her tumors covered so much of her body that they couldn’t find a vein through which the anesthesia could be passed, meaning they couldn’t anesthetic for surgery.

Ms. Sahadeo opted for local anesthesia, which involves numbing only the affected area instead of sedation. She underwent a 13-hour operation, fully awake.

Dr. Osborne was able to remove dozens of tumors, including several large ones on her face and “Frank” in her mouth, as well as the extremely large tumor on her leg.

Over the next ten weeks, he operated on Ms Sahadeo 24 times, for a total of 60 hours.

Four weeks after her last operation, at home in Trinidad, Ms. Sahadeo said, “Life is 100 percent 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 of course you can see my eyes. You can see my nose. You can see my mouth. I can see clearly and, most importantly, I can breathe much better.’

Ms. Sahadeo said she feels 98 percent better than before her procedures and now smiles more. Now that the tumor has been removed from her leg, she can walk and play with her granddaughter.

She said, ‘I feel beautiful. I feel really beautiful now. I feel fantastic. I came back a different person. I can’t expect anything better.’