An Australian woman with tumors growing along her nerves has had to learn to walk and talk again after the condition led to a rare brain cancer that left her in critical condition for months.
Emma Sinclair, from Forbes in New South Wales, was only meant to be in hospital recovering for 10 days after having part of an aggressive tumor removed from her brain that was the result of having a rare condition known as Neurofibromatosis, or NF1. .
Emma Sinclair (pictured) is battling aggressive brain cancer resulting from the rare genetic condition she has named Neurofibromatosis-1 or NF1, which can cause tumors throughout the body.
The 34-year-old told FEMAIL she was “stubborn and determined” to get back on her feet and regain some independence after major surgery on her brain left her unable to walk, talk and use her dominant right hand.
At the age of just three, Emma received her diagnosis of NF1, which has a variety of symptoms including tumors growing in the brain, spinal cord, and nerves.
‘(NF1) is when tumors grow on all your nerves and I’m lucky enough to be covered in them. They’re all indoors, so you can’t really tell I have it by looking at me,” he explained.
She said that NF1 did not affect her too much in her early childhood and adolescence, but that she had some learning difficulties and was never good at sports due to her “low muscle tone”.
Emma had the first of what would be 13 surgeries to remove a tumor when she was 11 years old. She would go on with another 12 operations.
In 2020, doctors told her they found a unique form of cancer in her brain that is made up of two parts, one stage one and the other stage three, but she didn’t have long to process the life-changing news. . .
I didn’t have much time to get used to it. I found out and the next day they operated on me,” Emma said.
Emma underwent surgery to remove a brain tumor in 2020 and had to learn to walk and talk after recovering from the operation in the intensive care unit for more than 90 days.
Surgeons were able to remove the stage one section, but were unable to remove the most aggressive part.
Emma was supposed to recover from the major surgery for just over a week, but she stayed in hospital for 106 days and lost the ability to walk, talk and use her right hand.
“I was lucky I didn’t remember much from that time,” Emma said.
“I had a lot of infections in my brain and stomach, then I had to have a shunt put in my brain, although we tried to avoid that.”
Emma received her NF1 diagnosis at age three. She said that it didn’t affect her much in her childhood, but she had her first surgery of 13 of hers to remove a tumor when she was 16 years old.
The shunt, which is a tube that must be surgically inserted to help drain fluid from the brain, malfunctioned and Emma had to get a second one.
‘Many things went wrong. My surgeon didn’t know what was causing it. He caused her a lot of stress,” he said.
After more than 90 days in the ICU, Emma was transferred to a rehabilitation center where she began to relearn how to walk and talk and was eventually allowed to go home.
“I have so much respect for the kids now because my God, it’s hard,” she laughed.
Emma was given a walker that she was told she would need to use for the rest of her life.
‘I didn’t like it at first. You don’t see young people wearing them, you just see a lot of older people wearing them, but I was stubborn and determined, mostly stubborn,” she said.
‘Every day I took little walks. It was only to the end of the street, which was not even 100 meters, but I was determined to go through and now I can walk more than a kilometer in one go.’
Despite recovering, Emma’s ordeal was far from over.
Emma was “resolute and stubborn” enough to learn to walk again with her frame, but now she has to start radiation treatment to slow the growth of the tumor that doctors were unable to remove.
Because surgeons were unable to remove the aggressive section of his brain tumor, he underwent 12 months of chemotherapy to slow his growth, during which time he finished his teaching studies.
Emma had only one unit left in the course when she was diagnosed with brain cancer, and even though she knew she would never be able to work as a teacher, she wanted to graduate.
‘My concentration is not so good anymore. It was never brilliant and it got even worse after the brain surgery, but I was determined to finish it,” she said.
After Emma completed her studies and a year of chemotherapy, she received another blow: the tumor did not respond to treatment and had doubled in size.
Emma may have to miss her college graduation, but she remains optimistic and refuses to let her illness “define” her, a trait she attributes to her mother (pictured right with her best friend, Lane)
She now travels an hour and a half each way to a hospital in Orange for radiation treatment, which she will have to do five days a week until Christmas.
Emma is disappointed to miss out on the chance to test her walking skills at the Children’s Tumor Foundation’s NF Conquest in Color fun run that aims to raise vital funds to support those affected by the rare condition.
She may also have to miss her college graduation, but she remains optimistic and refuses to let her illness “define” her, a trait she attributes to her mother.
She never lets things get in her way, so we never did. NF1 was never an excuse,’ Emma said.
“It was always ‘you can have this, but you can still do all these things’ and I think that’s what I’ve embraced.”
To donate to the Children’s Tumor Foundation and support those living with neurofibromatosis, click here.
What is Neurofibromatosis?
Neurofibromatosis (NF) is a group of three complex genetic conditions that cause tumors to form in nerve cells throughout the body, including the brain and spinal cord.
- Neurofibromatosis type 1 (NF1) – the most common form, affecting 1 in 2,500 people in Australia
- Neurofibromatosis type 2 (NF2): a rare form that affects 1 in 25,000 to 40,000 people in Australia
- Schwannomatosis: the rarest of the three with an incidence of 1 in 40,000 people
NF can cause a variety of significant health problems, including deafness, blindness, paralysis, physical differences, bone abnormalities, cancer, learning difficulties, and chronic pain.
NF can affect anyone regardless of age, ethnicity, gender, or family history and causes tumors (known as neurofibromas) to grow around nerve cells in the body, including the spine and brain, below the surface of the skin. the skin or deep in the body.
It is impossible to predict how mildly or severely someone with NF will be affected, and about half of all cases arise in families with no history of NF.
About 20 percent of children with NF1 will develop an optic pathway glioma (brain tumor).
About 50-80 percent of children with NF1 will experience learning or behavior difficulties.
Approximately 20 percent of children with NF1 will be diagnosed with Autism Spectrum Disorder or Attention Deficit Hyperactivity Disorder
The incidence of breast cancer is significantly increased in women with NF1.
Up to 90 percent of people with NF2 will develop vestibular schwannomas (benign tumors of the auditory nerves), and spinal tumors are seen in 60-80 percent of people with NF2.
Anxiety, depression, and social isolation are common among people living with NF, and the risk of suicide for people in their twenties is four times higher compared to the general population.