May 17th is observed annually as World Neurofibromatosis Awareness Day. It’s a day that attempts to raise awareness about a condition that affects millions of people, known as neurofibromatosis (NF). Many people who have it don’t even know they have it.

This condition causes tumors to form in a person’s brain, spinal cord, and nerves. Type 1 neurofibromatosis (NF1) usually appears during childhood and can cause learning disabilities, bone deformities, and high blood pressure.

Type 2 neurofibromatosis (NF2) typically occurs during adulthood and can cause difficulty with balance, hearing loss, and vision loss. There’s also a third type, Type 3 neurofibromatosis (NF3), that can occur during adulthood and can cause chronic pain. All three types are rare but serious, and that’s why this holiday attempts to educate the public about this condition and its symptoms.

The History of World Neurofibromatosis Awareness Day

Although we’re currently unsure of when World Neurofibromatosis Awareness Day was created, we do know that it was established by the Children’s Tumor Foundation (CTF). This organization is attempting to put an end to NF by raising money for research. The organization also attempts to shine a light on this condition and share NF facts with the world.

Some Quick Facts About NF

We’ve included some facts about NF to help people get a jump start on learning about this condition. We hope that the following facts are useful to everyone learning about this day. Let’s check them out.

• Up until 1986, scientists believed that Joseph Merrick (“The Elephant Man”) had NF1. Scientists now know that he had Proteus Syndrome.
• Most people with NF will live a near-normal life expectancy, but some individuals do develop more serious complications from this condition.
• NF1 occurs in about 1 in 3,000 people.

Observing World Neurofibromatosis Awareness Day

This holiday can be observed by learning more about NF and by spreading the word about this holiday using the hashtag #WorldNFAwarenessDay. This is also a good day to join fundraising efforts around the world that are attempting to raise money for a cure for this constellation of conditions.