The Portrayal of Neurofibromatosis in the Media Needs to Change

I am part of a community of rare families. Everyone of us has a loved one with the genetic condition neurofibromatosis type 1 (NF). It is a condition that affects only 1 in every 2,500 births — so when any mention of it arises in the media, we want to share like crazy to bring awareness. The problem is the way the condition is portrayed by the media is often incorrect, frightening and very misleading. We feel sharing would actually damage our precious community more than it would support us. What a sad situation to be in.

Here are three things I would like the media to remember when talking about neurofibromatosis:

1. It is not the “Elephant Man” condition, as often quoted in the media. The “Elephant Man” (Joseph Merrick, an Englishman with severe deformities who died in April 1890) was originally thought for years to have had NF1, but this has been disproven. Now it is believed he had Proteus syndrome. Even if he did have neurofibromatosis, referring to any genetic condition in this way is not beneficial. Although neurofibromatosis does cause facial and body deformities in some people, this is not the case for everyone. NF causes tumors to grow on nerves throughout the body, but for thousands of people affected by NF, they have no outward signs of the condition other than some minor birth makes on their skin (café au lait marks). Would you know that these beautiful children all had neurofibromatosis? I thought not!

2. Neurofibromatosis is not cancer. The very mention of the word “tumor” and the media seems to assume cancer. What can be confusing is some people with neurofibromatosis type 1 do need to have chemotherapy, like little Tayen here who despite having chemotherapy, sadly lost the sight in both of her eyes due to tumors on her optic nerves.

There is an increased risk of people with NF developing cancer, but the condition itself produces benign tumors, which although painful, disfiguring and debilitating, are not cancerous. Only a small percentage of NF tumors require treatment, and this is only if they will cause damage such as blindness (if on the optic nerve and growing) or paralysis (growing on the spinal cord for example). Some require treatment for cosmetic reasons too of course, but these are mostly carried out by operations rather than chemotherapy. It is painful, disfiguring and upsetting, but it is not cancer. The downside of this is it cannot be cured, making treatment difficult, as the tumors will continue to grow throughout life.

3. People with neurofibromatosis are not ugly! There has been a recent upsurge in the media about severe cases of neurofibromatosis in India where the gentlemen shown have huge facial tumors. The article mentions phrases like “terrified people will stare and make cruel remarks,” and “shunned from school because of his unusual appearance,” and a photograph showing his disfigurement with the words “boy with tumor causes his face to droop.” It has to be stressed this is a very unusual case, but there was little mention of that in the report.

How would you feel if your child read a similar article regarding a condition they had? It is terrifying for families of newly diagnosed children to see these articles and rightly or wrongly leaves them with the impression their precious child will grow up to be highly disfigured like the article describes.

Neurofibromatosis does not make anyone ugly, undateable, unemployable, or inferior. I cannot stress this enough.

When a family faced with a new and upsetting diagnosis reads such articles, what are they thinking? What must a mother’s heart feel like to have her beautiful baby shunned by strangers just because of some misinformation they have come across in the media?

My son is not the “Elephant Man,” nor does he have cancer and he is certainly not ugly. He has the genetic condition NF1 which means he has challenges with his vision, his learning and he is part of the one in four people with NF1 who also has autism spectrum disorder. I want to raise more awareness about his rare condition and I know many other families do too.

We need information based on facts, so people can learn to better accept us.

We need headlines that reflect real life, so we can attain greater awareness.

We need photographs and wording chosen carefully, so as not to perpetuate fear.

Right now my son cannot read, but I never want him to be scared to hear or read about his condition. I don’t ever want to see another family in tears because of another poorly written article on NF. I don’t want any more teenagers with NF ashamed of their body. I want my son to hear stories of people succeeding, people overcoming against the odds and stories of hope, but these are rarely told. This is why the portrayal of neurofibromatosis in the media needs to change.

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