Neurofibromatosis: A Disgusting and Really Painful Neurological Disorder

Son Dakika

In this random blog, I would also write about science and medical articles when I feel like it. I'd like to recall the amazing story of Chandra Wisnu from Indonesia, whose wife never left him even after he became "infested" with the bubbles. There's so much ignorance about neurofibromatosis. For starters, it's not contagious as it's actually a genetic disorder. 

For the overview, the Mayo Clinic gives this definition and why it's not just disgusting but also painful, which makes it more unbearable than a scar left behind:

Neurofibromatoses are a group of genetic disorders that cause tumors to form on nerve tissue. These tumors can develop anywhere in the nervous system, including the brain, spinal cord and nerves. There are three types of neurofibromatosis: neurofibromatosis 1 (NF1), neurofibromatosis 2 (NF2) and schwannomatosis. NF1 is usually diagnosed in childhood, while NF2 and schwannomatosis are usually diagnosed in early adulthood.

The tumors in these disorders are usually noncancerous (benign), but sometimes can become cancerous (malignant). Symptoms are often mild. However, complications of neurofibromatosis can include hearing loss, learning impairment, heart and blood vessel (cardiovascular) problems, loss of vision, and severe pain.

Neurofibromatosis treatment focuses on encouraging healthy growth and development in children who are affected by the disorder and on early management of complications. When neurofibromatosis causes large tumors or tumors that press on a nerve, surgery can reduce symptoms. Some people may benefit from other therapies, such as stereotactic radiosurgery or medications to control pain. A new medication is available to treat tumors in children, and other new treatments are being developed.

I was looking at the stories of neurofibromatosis victims. It's no surprise that these are very painful as it's the nerve tissues. I got disgusted looking at the images of people with tumors all over their bodies. Some develop really huge tumors that will disrupt their work. Some even have tumors that are covering their face, making it hard to breathe, eat, and see. It's not just disgusting to look at. The real disgust factor is that people inflicted with it are going to suffer not just from ignorance but also from the tumors themselves.

Bigger awareness is needed for this disorder. People need to know that those who have it, aren't contagious, and need help through surgery. I doubt there will be a complete cure but one can make lives for those afflicted by it, live better.