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Neurofibromatosis Month – May 2023

Neurofibromatosis Month is observed in May every year. This month is set aside and observed throughout the country. The aim is to raise awareness and improve the visibility of this disease where tumors grow in the nervous system. The disease is not cancerous but can cause a range of symptoms and issues in patients. Spots, bumps, scoliosis, hearing and vision loss, muscle wasting, balance issues, and pain across the body are common symptoms of neurofibromatosis. There is no known cure for neurofibromatosis and treatment comprises the management of symptoms.

History of Neurofibromatosis Month

Neurofibromatosis Month is observed throughout the country in the month of May. It is an important way of improving the visibility of this disease among doctors and the general population to allow for early detection. The earlier that the disease is detected, the easier it is for individuals to manage their symptoms.

Neurofibromatosis is a group of three conditions. In all these conditions tumors grow on nerves throughout the body. The three types of neurofibromatosis are N.F.1, N.F.2, and N.F.3. All these types are caused by mutations in specific genes called ‘oncogenes.’ This is a gene that has the potential to cause cancer. Despite this, the tumors that are caused by neurofibromatosis are rarely cancerous. Different mutations in the oncogenes cause the different types of the disease.

There is no known cure for any of the different types of neurofibromatosis. The disease is likely genetic, but there is insufficient research done into the causes. More often than not, neurofibromatosis occurs spontaneously during early development. This makes it an important cause of concern for children. The symptoms of the disease typically worsen with time and the tumors may become cancerous. At this point, the tumors are removed surgically. Raising awareness and educating people about neurofibromatosis is of great importance. It may help people with the disease with early diagnosis and treatment to manage symptoms. The month is also an opportunity for people living with the disease to share their stories that give hope to people who have been newly diagnosed with the disease.

Neurofibromatosis Month timeline

1st Century A.D.
Descriptions Record the Disease

Descriptions of symptoms that match neurofibromatosis are recorded in medical practice.

1882
The Disease is Formally Described

German pathologist Friedrich Daniel von Recklinghausen formally describes neurofibromatosis.

1900s
Research Into Neurofibromatosis Increases

From 1909 onwards, the research into the conditions increases.

1987
Different Types Identified

A panel of the National Institutes of Health identifies the different types of neurofibromatosis.

Neurofibromatosis Month FAQs

What is the life expectancy of someone with neurofibromatosis?

People with neurofibromatosis have a normal life expectancy, barring any complications.

What does a neurofibroma feel like?

Neurofibroma can feel like knots or cords underneath the skin.

Can diet help N.F.1?

Changes to diet can help manage symptoms of N.F.1.

How to Observe Neurofibromatosis Month

  1. Educate people about N.F.

    Many people don’t know about N.F. and make unfounded assumptions. Educate your friends and family about this disease during this month.

  2. Contribute to fundraising campaigns

    There is no known cure for this disease. Support people with N.F. by contributing to researchers looking to improve their quality of life and find a cure. This is the best form of help.

  3. Share patients’ stories

    Diseases like N.F. can be very isolating. Share stories of people with N.F. and help others with the disease feel less alone. It also motivates newer patients.

5 Facts About Neurofibromatosis That You Probably Didn’t Know

  1. N.F.1 doesn’t need prolonged treatment

    People with N.F.1 need to be monitored periodically by a specialist but typically don’t need long-term treatment.

  2. Vision loss is common with N.F.2

    Children and teenagers with N.F.2 can develop cataracts and frequently the disease is diagnosed as a result of vision loss.

  3. Many people have the disease

    About two million around the world suffer from one of the three different types of the disease.

  4. The tumors can affect the entire body

    The tumors associated with N.F. primarily grow on the nerves, but they can spread to the brain, cardiovascular system, bones, and skin.

  5. Clinical trials are ongoing

    Current treatments are limited, but clinical trials are in progress to improve the quality of life for people with N.F.

Why Neurofibromatosis Month is Important

  1. We want to spread the word

    We think that more people should be aware of N.F., so they can get genetic counseling. We also think that people should be informed about the available treatments if they suspect they have N.F.

  2. We want to educate people

    People who have visible symptoms of N.F. are often reduced to their disease. We want to educate people so that they learn how to accommodate and treat people with the disease.

  3. We want to support patients

    We think that patients with N.F. have difficult lives, and we want to help them. We want to support them in their treatments and help fund research that improves their quality of life.

Neurofibromatosis Month dates

YearDateDay
2023May 1Monday
2024May 1Wednesday
2025May 1Thursday
2026May 1Friday
2027May 1Saturday
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