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Living with Neurofibromatosis: A Mother’s Journey

When Mercedes Christensen (52) looks in the mirror, she misses her old face – before it was covered by dozens of small and larger tumors.

– I used to have beautiful skin, says Mercedes from Boise in the USA – and sighs.

Got five “insignificant” symptoms

The tumors are benign, so they are not dangerous, but they are still troublesome for the mother of two. Not just because she notices them on her body, but because people stare.

MISSING HERSELF: – I had such beautiful skin, says Mercedes when she thinks back to the time before all the tumors appeared. Photo: Kennedy News and Media Show more

Sudden outbreak

She got her first small tumor when she was six years old. By the time she was 19, there had been five of them, and Mercedes went to the doctor. One of the tumors was removed, and Mercedes learned that she had neurofibromatosis type 1 (NF). The doctors reassured her that it was not dangerous.

Nevrofibromatose

Neurofibromatosis type 1 is a congenital disease that can affect a number of organs. The symptoms vary greatly from person to person. Skin changes, so-called “café-aulait” spots, are common. In addition, small tumors – so-called neuro fibromas – in the skin are common. Dense areas with freckles are often seen in the groin and armpits. Some get almost no tumours, others get tumors on internal organs.

Source: NHI.no

Sea view

But when she became a mother for the second time at the age of 29, a lot of small tumors suddenly broke out all over her body and on her face.

It was the hormonal changes that started it, and the tumors were impossible to stop.

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– I hid, as most others would. I covered my face with my hair and stayed inside except when I had to go to and from work, she says.

GOOD SUPPORT: Mercedes and her husband Rodney (58). – He makes me feel beautiful, she says. Photo: Kennedy News and Media Show more

Not shameful

The doctors had not told Mercedes that the condition is hereditary. That is why she was incredibly sad when the children grew up, and it was established that both Louise (27) and Emma (24) are affected.

But it made her realize she couldn’t run away any longer.

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– I don’t want them to think they have something to be ashamed of, she says.

Now Mercedes’ face is covered in small tumors. They are found in varying degrees around the body as well. In total, she has around 200 tumors, large and small. The daughters are not as badly affected as Mercedes – and she prays to God that it does not get worse for them.

Live to the fullest – overtime

Many have asked her why she has given birth to children when she suffers from such an illness.

– It makes me incredibly provoked. Do they say something like that to someone who carries the breast cancer gene? Or who has diabetes? she asks, upset.

Mercedes tries to let the comments bounce off. But it’s not always that easy.

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– Once I was at the shop with Emma, ​​a lady came up to me and said “If I had looked like you, I would have taken my life”. I held Emma, ​​and replied “It’s good you don’t, then.” The best thing is to meet negativity with something positive. But I don’t always manage to do it, says Mercedes.

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2023-09-10 15:16:32
#body #covered #tumors

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