On the 17th of May every year, we celebrate World Neurofibromatosis Day. The aim of this is to raise awareness for the neurogenetic condition. Many people are unaware of the condition, never mind knowing the impact that it has on an individual. This condition is actually common, more common than cystic fibrosis and muscular dystrophy, yet many medics, politicians and healthcare professionals have never even heard of the condition. This means that there is a low contributing factor to funding and in turn very little service and support.
What is Neurofibromatosis?
It is a genetic disorder which causes tumours to form on the nerve tissue. The name might seem like a long word, but it does make sense. Neuro means nerve, fibroma means tumour and tosis means increase. These tumours are usually benign but sometimes they can be malignant.
What are the symptoms:
The symptoms of the condition are mild but can have some complications such as hearing loss, learning impairment, heart and blood vessel problems, loss of vision and severe pain.
There is no cure for the condition but the symptoms can be managed. The tumours are not generally painful depending on their location on the body. If they bother an individual they can be removed. This reduces the risk of itching, infection, numbness and discomfort. Unfortunately, they do sometimes grow back. If the tumours are in areas such as the optic nerve and affect eyesight, they will be surgically removed.
What can you do to help create awareness:
There are many ways to get involved with World Neurofibromatosis Awareness Day 2018. Spreading the word about Neurofibromatosis is the main aim of an individual getting involved. If you follow the link, you will find out the 7 different ways in which you can help to spread the word about the condition.