Neurofibromatosis Day is observed every year on May 17. It is believed that thousands of individuals have neurofibromatosis (NF) but are unaware of their condition. Moreover, there is still no treatment for N.F. Therefore, the day is observed to bring attention to this condition, educate people about it, and raise funds for research so that effective treatments for N.F. can be developed. It is also meant to encourage parents to reexamine their children for symptoms so that they can be treated sooner. Therefore, let’s support those with NF and the research to eradicate NF.
The background of Neurofibromatosis Awareness Day
Neurofibromatosis (NF) is a disorder that causes the development of tumours in the nervous system. Symptoms of the three varieties of N.F. — N.F.1, N.F.2, and schwannomatosis — include multiple spots on the skin, small benign growths on or under the skin, freckling in the armpits or groyne, and scoliosis. Hearing loss, facial weakness, vision loss, and muscle atrophy can be symptoms of N.F.2. The symptom of schwannomatosis, the rarest form of neurofibromatosis, is discomfort anywhere in the body, not necessarily in the location of a schwannoma.
These forms of neurofibromatosis are caused by chromosomal mutations. Schwannomatosis is caused by a mutation on the SMARCB1 gene. In the majority of cases, N.F.1 symptoms are mild, but in some cases they can cause disfigurement and psychological problems. In instances of N.F.2, patients may also develop benign brain or spinal tumours. Some patients with schwannomatosis may develop multiple tumours throughout the body.
N.F. tumours are typically noncancerous, and 50% of individuals with N.F.1 or N.F.2 inherit the disorder from a parent. There is a 50% possibility that patients with N.F.1 or N.F.2 will transmit the disease to their offspring. In the majority of cases, schwannomatosis is not inherited. There is currently no approved treatment for N.F.1, but several promising clinical trials are currently underway. Although surgical excision of tumours is an option, chemotherapy is the preferred treatment. It is recommended that adolescents who have been diagnosed with N.F.1 undergo an annual exam.
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5 NEUROFIBROMATOSIS FACTS YOU NEED TO KNOW
N.F. affects millions of people worldwide, as it affects one in every 3,000 individuals.
N.F. impacts all populations, regardless of ethnicity or gender.
Approximately fifty percent of all cases of N.F. occur in families with no prior history of the condition.
According to the Children’s Tumour Foundation, there are fifty clinical trials focusing on N.F.
The incidence of NF is greater than that of cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s.
NEUROFIBROMATOSIS AWARENESS DAY DATES
| Year | Date | Day |
|---|---|---|
| 2023 | May 17 | Wednesday |
| 2024 | May 17 | Friday |
| 2025 | May 17 | Saturday |
| 2026 | May 17 | Sunday |
| 2027 | May 17 | Monday |
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