Neurofibromatosis type 2 (NF2) is one of the three kind of Neurofibromatosis (NF), a rare disorder that affects one in every 33,000 people around the world—including myself. To put it simply, NF2 causes benign slow-growing tumours to form on nerves throughout the body, including the brain and spinal cord, and there lies the danger of this disorder as a tumour can cause excessive pain and other physical disabilities, such as limb weakness and deafness, by growing on critical nerves. Personally, I had to overcome multiple disabilities and hardships in my life including paralysis, facial palsy, half-blindness, deafness, and, most importantly, societal ignorance and negligence of medical professionals in Egypt.
Why should you care?
So, with that said, why should you care? You most likely do not have NF2 and nobody in your family does either. And I recognise that it is not something that everyone will encounter. However, though NF2 may seem far from being a threat of any kind, in reality, it is, indirectly, an issue of public health.
As an “average” person, you have a chance of developing a tumour in your lifetime. In fact, in Egypt, that chance may be above 50%. The hallmarks of NF2 are schwannomas, meningiomas, and ependymomas. These types of tumours comprise over 45% of the tumours any normal person can develop throughout their life.
Having said that, let me share with you what I was told when I read an article quoting the chair of the research committee in the Congress of Neurosurgical Doctors, Ashok Asthagiri. In the article, he said, “gaining a better understanding of how these tumours develop, what triggers them to grow, and developing better treatments for these types of tumours for patients with NF2 will lead to a more widespread, more general benefit to everyone.”
As such, any research into this disorder could help many, many Egyptians, NF2ers and non-NF2ers, live healthier, stronger lives—especially when one considers that NF2 is still relatively unknown here in Egypt. As it stands, there are more than 99 million people in Egypt. Given that NF2 affects one in every 33,000 people, this would mean that there are possibly more than 3,000 Egyptians fighting this disorder—many of whom could be undiagnosed and would, eventually, die.
Tuesday was Neurofibromatosis Type 2 Awareness Day. With that being said, I extend a request to the Egypt Cancer Network 57357, to rename the organisation Egypt Cancer and Neurofibromatosis Network. Aside from the economic benefits of offering management of all kinds of neurofibromatosis in Egypt, the organisation could be indirectly saving the lives of millions of Egyptians, which I am sure was the mission of the organisation to start with, by offering research and education of NF.
Adham El Khouly is an undergraduate engineering student at the American University in Cairo