An Idaho mother whose face is covered in 200 tumors has spoken out against trolls who have vilified her for passing her condition on to her children.
Mercedes Christensen, 52, has the rare genetic condition neurofibromatosis type 1 (NF1), which causes small benign tumors to form under the skin and along the nerves.
Ms Christensen was diagnosed with the condition at 19, which affects fewer than one in 2,500 people worldwide to varying degrees. In many people, it manifests as just a few skin tags or minor spots.
‘I got my first tumor at age six from a chicken pox scar, I didn’t have any 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.’
But after giving birth to her youngest daughter at age 29, Ms Christensen suffered an explosion of tumors all over body, especially her face.
‘I hid like most people with it do. I used to cover my face with my hair, look down and I wouldn’t go out unless it was to work,’ Ms Christensen said.
Doctors told her that it was likely hormonal changes from childbirth that caused her condition to worsen so rapidly.
Years later, she learned that the condition had been passed down to her daughters, now 27 and 24.
The girls were diagnosed at ages six and three.
‘After my kids were diagnosed, I realized I couldn’t hide because my daughters will learn that what they have is shameful.’
‘I changed my outlook. I didn’t want them to be self-conscious about what they looked like.’
While the girls have shown signs of it, they are not nearly as severe as their mother’s.
Neurofibromatosis is a group of genetic conditions that cause tumors to grow on nerves throughout the body.
NF1 is the most common type of neurofibromatosis, affecting about one in 2,500 people worldwide, according to the Children’s Tumor Foundation (CTF).
The face, where most of Ms Christensen’s tumors are, has two complex networks of trigeminal nerves on each side.
The tumors are usually benign, or non-cancerous, and are typically found on or under the skin. Patients with NF1 may also have light brown spots on the skin, also known as café-au-lait spots.
Symptoms may develop gradually over many years, and the severity of the condition can vary considerably from person to person.
‘Each person with NF will get tumors at different rates and ages or not even get any visible tumors. They can grow internally on the organs,’ Ms Christensen said.
‘It’s progressive, they don’t go away on their own. They need to be completely severed from the nerve ending and the nerve ending needs to be killed with electricity.’
Ms Christensen estimates she has about 200 tumors.
While tumors are usually benign, NF1 can cause a host of other health issues. Half of patients with NF1 have learning disabilities, according to CTF, and some patients may develop scoliosis, curvature of the spine, from bones softening.
Patients with NF1 are also at higher risk for high blood pressure and breathing problems.
Ms Christensen said she was riddled with guilt after passing NF1 to her daughters.
‘I felt horrible that I’d passed it onto them. I was never told that there was a chance I would pass it on,’ she said.
‘They don’t have it as severe as me, and they may not get it as severe as I do. I hope to God that they don’t.’
She has also been vilified by strangers who say she should never have had kids.
‘I tend not to react but you can only take so much before you call someone out so nobody else does it,’ she said.
‘I was at the grocery store with [my daughter] and a woman came up to me and said “if I looked 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.’