An Idaho mother, whose face is covered in 200 tumors, has spoken out against trolls who have slandered her for passing her condition on to her children.
Mercedes Christensen, 52, has the rare genetic disorder neurofibromatosis type 1 (NF1), which causes small benign tumors under the skin and along nerves.
Ms Christensen was diagnosed with the condition at the age of 19, which to varying degrees affects less than one in 2,500 people worldwide. In many people, it manifests as just a few skin tags or small spots.
“I got my first tumor at age six from a chickenpox scar. I had no other warning signs,” she said.
“When I was 19 I had four or five bumps, so I had one removed by a dermatologist to find out what it was. They said it was nothing serious.’
Mercedes Christensen, 52, of Boise, Idaho, was diagnosed with neurofibromatosis type 1 (NF1) at age 19. She then unknowingly passed it on to her now grown daughters
Mrs Christensen only had a handful of tumors when she was first diagnosed, but after the birth of her youngest daughter there was an explosion of tumours, mainly on her face
But after giving birth to her youngest daughter at age 29, Ms. Christensen suffered an explosion of tumors all over her body, especially her face.
“I hid like most people do. I used to cover my face with my hair, look down and I wouldn’t go out unless it was for work,” Ms Christensen said.
Doctors told her it was probably hormonal changes from childbirth that caused her condition to worsen so quickly.
Years later, she learned that the condition had been passed on to her daughters, now 27 and 24.
The girls were diagnosed when they were six and three years old.
“After my kids were diagnosed, I realized I couldn’t hide because my daughters will learn that what they have is shameful.”
“I’ve changed my outlook. I didn’t want them to feel insecure about what they looked like.’
While the girls have shown signs of it, they are nowhere near as serious as their mother’s.
Neurofibromatosis is a group of genetic disorders that cause tumors to grow on nerves throughout the body.
NF1 is the most common form of neurofibromatosis, affecting about one in 2,500 people worldwide, according to the Children’s Tumor Foundation (CTF).
The face, where most of Mrs. Christensen’s tumors are, has two complex networks of trigeminal nerves on each side.
The tumors are usually benign or non-cancerous and are usually found on or under the skin. Patients with NF1 may also have light brown spots on the skin, known as café-au-lait spots.
Symptoms can develop gradually over many years and the severity of the condition can vary significantly from person to person.
“Each person with NF gets tumors at different rates and ages or doesn’t even get visible tumors. They can grow internally on the organs,” Ms Christensen said.
“It’s progressive, they don’t go away on their own. They must be completely separated from the nerve ending and the nerve ending must be killed with electricity.”
Ms Christensen has been married for 14 years to her husband, Rodney, 58. She said he makes her feel beautiful ‘even with the tumours’
Strangers have slandered Mrs. Christensen for passing NF1 on to her daughters, even though she was originally told there was no chance they would inherit it. “I don’t meet negativity with negativity,” she said
Ms. Christensen estimates that she has about 200 tumours.
While tumors are usually benign, NF1 can cause a host of other health problems. Half of patients with NF1 have learning disabilities, according to CTF, and some patients may develop scoliosis, curvature of the spine, from bone softening.
Patients with NF1 are also at higher risk of high blood pressure and breathing problems.
Ms Christensen said she was full of guilt after passing on NF1 to her daughters.
“I hated that I had passed it on to them. I was never told there was a chance I would pass it on,” she said.
“They don’t have it as bad as I do, and maybe they won’t get it as bad as I do. I hope to God they don’t.’
She has also been slandered by strangers who say she should never have had children.
“I tend not to respond, but you can only take so much before calling someone so no one else does,” she said.
‘I was in the supermarket with [my daughter] and a woman came up to me and said, “If I was like you, I’d kill myself.”‘
“I said, ‘Well, it’s a good thing you don’t.”‘
“I’m not going to meet negativity with negativity.”