World Neurofibromatosis Awareness Day

Neurofibromatosis is a genetic condition that can appear at any point in a person's life, as long as they have the 'wrong imprint' on the chromosome that causes it.

Because it is genetic, there is not much that can be done to prevent it from appearing in those affected.

A common mutation, neurofibromatosis can manifest itself as numerous bumps and tumors throughout the body. Tumors are not usually cancerous, but they can appear in very large numbers and in some cases they are quite disfiguring.

World Neurofibromatosis Awareness Day aims to raise awareness about the disease, help people with it better understand, and help remove the stigma that some people have endured due to its disfiguring aspects.

History of World Neurofibromatosis Awareness Day

The condition has existed for centuries, with some records describing patients with persistent "warts" and what would become known as "cafe au lait" nodules.

There are two types of neurofibromatosis.

NF1 can be detected early with the appearance of flat brown birthmarks, or freckles in unexpected places. This type of neurofibromatosis also presents with lumps and bumps on the skin, called neurofibromas.

Since it can cause learning difficulties, it is important that it is picked up early in a child's life.

The second type, NF2, tends to begin to manifest during the teen years or later. It appears as a nervous system tumor, which tends to form on the brain and on the spine.

Although the tumors found in NF2 are not usually cancerous, they can cause a number of health problems such as deafness or hearing loss and some mobility problems.

Unlike NF1, if you have NF2, you are more likely to need surgery or treatment for brain or spine tumors at some point in your life.

For some people, surgery to remove small tumors may be possible, and this is often an option for sufferers who find that the tumors are causing mobility problems.

For a large number of people with neurofibromatosis, the symptoms are too mild to lead a normal, productive life. However, in some severe cases, tumors can cause cosmetic problems and result in psychological trauma.

How to celebrate World Neurofibromatosis Awareness Day

Like many genetic diseases, there is no cure for neurofibromatosis, but awareness days like this have been created to ensure that research on it can continue to make a difference.

One of the most important steps to defeating disease is learning about it - and even if you don't have neurofibromatosis yourself, it's still standing today to advocate for those who do.