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Lifestyle Changes For Neurofibromas

A neurofibroma (NF) is a non-cancerous tumor of the nerve-sheath, primarily occurring in the peripheral nervous system. The average lifespan of individuals with neurofibromas is mostly normal if no further complications are associated with it. Neurofibromas patients may have a standard life with the correct knowledge and guidance about the disease. While mental impairment in neurofibromas is usually mild, it is a recognized cause of hyperactivity disorder with attention deficit1.

Neurofibromas usually do not go away once they appear. The coffee-milk-colored spots (cafe-au-lait) may fade over time. Neurofibromas may develop at any stage of life, as well as the nerve compression symptoms.2

Lifestyle Changes For Neurofibromas

In everyday life, it is important, despite the disease of neurofibromas to be optimistic and confident to counteract the developments. Having a positive attitude to life will help you deal better with your challenges. Mental support is helpful in reducing stress. Exercises and training of different mental techniques may help you to establish the inner balance (improve mental strength) and enhance your well-being. Neurofibroma is a genetic disease and can be treated and controlled well with the available medical options if not fully cured. Therefore, experiments or self-experiments should be avoided. Instead, have confidence in conventional medical therapies. A timely investigation of the symptoms can lead to improved treatment.

If the swelling on the body is perceived as an unpleasant visual blemish, the affected person may cover themselves sufficiently by clothing. In addition, it is advisable to support self-confidence to be better able to cope with the illness in everyday life.3, 4

It can become a difficult task to look after children suffering from chronic neurofibromas. But most of the children with neurofibromas continue to enjoy healthy lives in adulthood and beyond with little to no complications. To help children to cope better:

  • Consult a trusted primary care physician who will be able to coordinate with other experts to offer proper care to your child. There are many children foundation to help you out. They also have a good online presence.
  • Enroll in different parent support groups that help proper guidance to give your kid the right therapy and management. This is helpful to enable children to cope with a chronic illness such as neurofibromas.
  • Accept assistance for daily requirements, for instance, caring or cleaning of your children and cooking. You may also consider taking a break from the job.
  • If your child is having a learning disability, seek assistance from academic support.5, 6

When To Visit Doctor For Neurofibromas?

Anyone who notices signs of neurofibromas (or neurofibromatosis) in his or her child should consult a doctor. Symptoms such as swelling, indefinable pain or visible changes in the skin must be examined by a doctor. The same applies to mental changes or hormonal fluctuations that are not due to any specific cause. The disease requires in each case a medical diagnosis and treatment, otherwise, growth of the tumor and the associated complications may escalate.2

Persons earlier diagnosed with a tumor should always inform the doctor if they suspect a recurrence. A neurofibroma usually needs to be surgically removed if causing discomfort and other problems. During treatment, the patient must visit a doctor regularly to ensure that no complications occur.2

Knowing Your Condition

People who have a neurofibroma should be fully informed about the condition and the possible adverse effects. Since mutations may occur in individual cases, the risk of malignant development should never be underestimated. Regular medical checks and examinations are necessary to avoid triggering life-threatening situations. In case of abnormal changes, contact a doctor immediately.1, 2


For many individuals, neurofibromas can be completely harmless, requiring no medical intervention. But, it can cause several complications for many. This genetic condition has no complete cure. Having the right knowledge about the disease and its progression is necessary to cope with this condition. Regular monitoring of the disease progression and consulting your doctor at the earliest is necessary. As the disease affects mostly children, it is important to provide them with ample support and care, particularly psychologically to avoid depression. Maintaining a healthy lifestyle can help patients have a better prognosis of the disorder.


  1. Ferner RE, O’Doherty MJ. Neurofibroma and schwannoma. Current opinion in neurology. 2002;15(6):679-684.
  2. Tucker T, Wolkenstein P, Revuz J, Zeller J, Friedman J. Association between benign and malignant peripheral nerve sheath tumors in NF1. Neurology. 2005;65(2):205-211.
  3. Nakahira M, Nakatani H, Sawada S, Matsumoto S. Neurofibroma of the larynx in neurofibromatosis: preoperative computed tomography and magnetic resonance imaging.
  4. Archives of Otolaryngology–Head & Neck Surgery. 2001;127(3):325-328.
  5. Gal TJ, Shinn J, Huang B. Current epidemiology and management trends in acoustic neuroma. Otolaryngology—Head and Neck Surgery. 2010;142(5):677-681.
  6. Gesundheit B, Parkin P, Greenberg M, et al. The role of angiogenesis in the transformation of plexiform neurofibroma into malignant peripheral nerve sheath tumors in children with neurofibromatosis type 1. Journal of pediatric hematology/oncology. 2010;32(7):548-553.
  7. Gerrand CH, Rankin K. The hazards of biopsy in patients with malignant primary bone and soft-tissue tumors. Classic Papers in Orthopaedics: Springer; 2014:491-493.

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Sheetal DeCaria, M.D.
Sheetal DeCaria, M.D.
Written, Edited or Reviewed By: Sheetal DeCaria, M.D. This article does not provide medical advice. See disclaimer
Last Modified On:July 26, 2019

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