Mother with 200 tumors due to neurofibromatosis says her daughter has helped her gain confidence

Mother, 33, who has 200 skin tumors, says her daughter, 8, with the same rare condition has boosted her confidence because she ‘don’t care what people think’

  • Jamila Gordon, 33, of St Croix, US Virgin Islands, was diagnosed with neurofibromatosis when she was a baby when a lump formed on her stomach
  • Has developed tumors on every part of her body and says strangers stare
  • NSdaughter, Tatyana, eight, has helped her regain confidence because despite people staring, she doesn’t care what anyone thinks

A mother who is covered from head to toe with more than 200 tumors due to a rare condition says she has found her confidence because her eight-year-old daughter with the same condition “don’t care what people think.”

Jamila Gordon, 33, of St Croix, US Virgin Islands, was diagnosed with neurofibromatosis when she was a baby when a lump formed on her abdomen.

Since then, she has developed hundreds of tumors on every part of her body and says that strangers on the street have eroded her confidence and “made her anxious.”

But her daughter, Tatyana, eight, has helped her regain confidence because despite people staring, she “don’t care what anyone thinks.”

Jamila Gordon, 33, of St Croix, US Virgin Islands, was diagnosed with neurofibromatosis when she was a baby when a lump formed on her stomach

Since then, she has developed hundreds of tumors on every part of her body and says that strangers on the street have eroded her confidence and

Since then, she has developed hundreds of tumors on every part of her body and says that strangers on the street have eroded her confidence and “made her anxious.”

But her daughter, Tatyana, eight, has helped her regain confidence because despite people staring, she doesn't care what anyone thinks

But her daughter, Tatyana, eight, has helped her regain confidence because despite people staring, she doesn’t care what anyone thinks

Jamila said, “The tumors hurt and they really itch. They are all over my body and on the bottoms of my feet, making it difficult to walk.

“I have too many to count, but I’d say I have over 200.

“It really eroded my confidence and it took me a while to get my confidence back.

“I get really nervous and depressed and I get anxious because people are staring at me.

Jamila was diagnosed when she was a baby when her mother found a lump on her stomach and since then she has had a number of tumors removed only to have them grow back

Jamila was diagnosed when she was a baby when her mother found a lump on her stomach and since then she has had a number of tumors removed only to have them grow back

Jamila says people are so uncomfortable with her that she doesn't even have a job anymore because of the way she looks

Jamila says people are so uncomfortable with her that she doesn’t even have a job anymore because of the way she looks

Tatyana has also been diagnosed with the disease, which is genetic, and Jamila says that although she is concerned about her future, it was Tatyana who helped her regain some of her confidence.

Tatyana has also been diagnosed with the disease, which is genetic, and Jamila says that although she is concerned about her future, it was Tatyana who helped her regain some of her confidence.

Neurofibromatosis: the rare group of conditions that cause nodules to grow on nerve pathways

NEurofibromatosis is the name of a group of conditions that cause lumps to grow on nerves.

There are two main types, the most common being Type 1 or NF1. It affects about one person in 3,000 to 4,000. There is no known cure.

NF is caused by a mutation in one of the genes. About half of people with NF have no family history of the condition.

This is called a spontaneous gene mutation. The other half of people have inherited NF from their mother or father.

Some patients are affected by neurofibromas, which usually appear during adolescence.

These may first appear on the skin as a purplish spot, before a small fibrous lump appears.

They can also grow along nerves located deeper in the body, which can be painful if struck.

The lumps may increase in number over a person’s lifetime.

NF has also been linked to an increased risk of stroke as growths develop on nerve cells in the brain and cut off the organ’s blood supply.

There is no treatment to prevent the lumps from appearing, although surgery or laser treatment can sometimes be used to remove them.

“Kids stare at me, some people will come and ask, but many will just stand and stare.

“When I was younger I was bullied at school so I found it hard to learn and I never wanted to go.

“It’s influenced me to get into relationships because of my confidence and because the condition makes me depressed.”

Jamila was diagnosed when she was a baby when her mother found a lump on her stomach and since then she has had a number of tumors removed, only to have them grow back.

Jamila says people are so uncomfortable with her that she doesn’t even have a job anymore because of the way she looks.

She said: ‘I used to work in a daycare where the kids loved me, they stroked my tumors and were very curious, but I could see the parents feeling uncomfortable and before I knew it I was told I wasn’t there. could work. not anymore.

‘That happened a few times. It’s a shame because I love kids, but it was hard to get a job because of my condition.”

Tatyana has also been diagnosed with the disease, which is genetic, and Jamila says that although she is concerned about her future, it was Tatyana who helped her regain some of her confidence.

She said: ‘It took a long time for me to regain my self-confidence, but thanks to Tatyana I have regained a lot of it.

“She’s just starting to notice people staring, but she doesn’t care what anyone thinks.

“After school she calls my name and runs to me for a hug.

“Every day I try to put a smile on my face and be the best wife and mother I can be to my daughter who loves me for who I am.

‘I’m worried about Tatyana, because she also has the disease.

“She has developed little spots so far and the doctor said they won’t grow into tumors, but you never know with this condition.

“They can get bigger when she reaches puberty.”

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