As the monkeypox outbreak has garnered increased attention both in the news and social media, individuals with neurofibromatosis (NF) who have cutaneous neurofibromas (also known as dermals, or ‘bumps’ on the skin) are reporting a range of reactions both online and in public – from outright harassment to quizzical looks, and more.
This statement from the Children’s Tumor Foundation (CTF), was released on August 5 to help set the record straight and we have been approved to re-share in this forum. We have updated links with information relevant to Australia.
We have also included our media release below.
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At the CTF, we are not monkeypox experts (visit the Australian Department of Health and Aged Care for more info on that disease), but we are NF experts, and the two conditions could not be more different.
NF, also known as neurofibromatosis, is a genetic condition that causes tumours to grow on nerves throughout the body. Sometimes these tumours present on the nerve endings on the skin, and can appear as bumps called cutaneous neurofibromas, or dermals. They are considered tumours (growths), but are also benign (non-malignant). The person living with these NF ‘bumps’ is not contagious – in fact, quite the opposite. Because NF is genetic, the person is born with it (which is why we are called the Children’s Tumour Foundation, and we also serve the NF patient population of all ages).
While these dermals can become more prevalent as one gets older (just like the rest of the body changes as we get older), their effects are unique to each individual.
We reiterate: one cannot catch NF – it is not contagious. People are born with it. NF affects 1 in 2,500 births of all populations equally – all races, ethnicities, genders equally – which means that over 2.5 million people worldwide have NF. And chances are, with those statistics, you’ve probably met someone with NF and never realised it. Each NF case is as unique and individual as the person living with it.
By contrast, monkeypox is a viral condition that sometimes causes a rash and reddish bumps on the skin. It does not look like NF, it is not related to NF, and it is not NF. Our hearts go out to those dealing with the monkeypox outbreak, and we encourage those susceptible to that risk to take precautions, talk to their doctor, and learn more on the Australian Department of Health and Aged Care website.
In recent days, we have been stunned to see photos and videos of people living with NF posted on social media – without their permission – with disparaging remarks.
We want to be clear on this point: we are fiercely protective of the NF community and all NF patients and their families.
No one should ever be harassed, accused, shamed or bothered in any way, by anyone. Not anyone with NF, or the unrelated monkeypox, nor anyone ever.
DOWNLOAD MEDIA RELEASE