Disease
Neurofibromatosis

Overview of Neurofibromatosis

Neurofibromatosis (NF) is a genetic disorder characterised by the growth of benign tumors on nerve tissues. It typically manifests in two forms: Neurofibromatosis Type 1 (NF1) and Neurofibromatosis Type 2 (NF2), both of which can lead to various complications, including skin changes, hearing loss and nerve damage.

Types of Neurofibromatosis

  • Neurofibromatosis Type 1 (NF1): The most common type, often diagnosed in childhood. It causes skin changes such as café-au-lait spots and the growth of benign tumors called neurofibromas.
  • Neurofibromatosis Type 2 (NF2): A rarer form that primarily affects the nervous system, causing tumors on the auditory nerve, which can lead to hearing loss.

Symptoms of Neurofibromatosis

  • NF1: Café-au-lait spots, freckling in the armpits or groin, neurofibromas, Lisch nodules in the eyes and possible learning disabilities.
  • NF2: Tumors on the auditory nerve, leading to hearing loss, balance issues and possible vision impairment.

Causes of Neurofibromatosis

  • Caused by a mutation in the NF1 gene located on chromosome 17.
  •  Caused by mutations in the NF2 gene on chromosome 22.

Complications in Neurofibromatosis

  • Tumors may cause nerve damage, pain and physical deformities.
  • In NF2, hearing loss and balance issues are significant risks.
  • Some individuals may also experience cognitive issues and developmental delays.

Risk Factors of Neurofibromatosis

  • Family history of neurofibromatosis, particularly if a parent carries the mutated gene.
  • A family member with NF1 or NF2 increases the risk of inheriting the disorder.

Preventions of Neurofibromatosis

  • There are no known ways to prevent neurofibromatosis as it is genetic.
  • Regular monitoring and early diagnosis can help manage symptoms and prevent complications.

Diagnosis of Neurofibromatosis

  • Often diagnosed at birth or during childhood when signs like café-au-lait spots or neurofibromas become visible.
  • Diagnosis is often made through imaging tests like MRIs, which can detect tumors on the auditory nerve.

Treatments of Neurofibromatosis

  • There is no cure, but treatment focuses on managing symptoms. Surgical removal of tumors, pain management, and regular eye examinations are common.
  • Treatment often involves surgery to remove tumors affecting hearing, as well as hearing aids or cochlear implants.

Prognosis of Neurofibromatosis

  • Life expectancy is generally normal, but complications may arise, particularly if there is a large number of neurofibromas.
  • Prognosis depends on the extent of hearing loss and neurological involvement; however, with early intervention, quality of life can be maintained.

Care at MyhealthMydoctor

  • Personalised care plans to manage symptoms and ensure the best outcomes for patients with NF1 and NF2.
  • Regular monitoring by specialists, including dermatologists, neurologists, and genetic counselors.
  • Multidisciplinary support for pain management, cognitive therapy, and hearing rehabilitation.

Some Important Questions Patients Should Ask Their Doctor During a Consultation

  • What are the treatment options available for my symptoms?
  •  Is surgery necessary for neurofibromas?
  • Can neurofibromatosis affect my children?
  • How often should I schedule check-ups to monitor the progression of the disease?
  • Are there any medications to prevent tumor growth?
  • What are the chances of passing neurofibromatosis to my child?

What Patients Expect from Doctors During Consultation?

  • Clear explanations about the condition and its progression.
  • Information on available treatments, their risks and benefits.
  • Personalised advice on managing symptoms and preventing complications.
  • Emotional support and guidance for coping with the challenges of living with neurofibromatosis.