NF for Adults

It is important that medical checks are conducted at least annually – even if you do not have any symptoms.

These appointments will cover things like routine blood pressure and skin checks; however, it is important that individuals know when to contact their GP and/or NF Specialists in between these annual visits.  

• Existing neurofibromas that become painful, hard to touch or grow rapidly. 
• Onset of persistent headaches 
• Any type of new, persistent pain 
• Persistent itching 
• New visual problems 
• New or changes in hearing problems 
• Seizures 
• Any new weakness, numbness or change in function 
• Balance issues 
• If you are feeling down or overwhelmed by your condition

If you have been largely reliant on your parents up until now to keep track of your appointments and medical information, you may find our Health Management Kit helpful to keep track of this information. Please contact our support team if you would like a kit sent to you.

Symptoms of NF2-SWN may become apparent in early adulthood or later in adult life. Your first symptoms may have been ringing in the ears, headaches or balance issues or perhaps some hearing loss. This is because the presence of bilateral vestibular schwannomas is most often the first indication of the condition.

The health implications for you will be dependent upon the way in which you are affected. Talk to your GP and/or specialists about new symptoms or changes in symptoms. 

Symptoms usually begin once you’re over the age of 30 and the most common feature of the condition is pain.

As pain is often the only symptom of Schwannomatosis, it is a condition that is difficult to diagnose and for many, it can be several years before the source of the pain is identified.  Pain management, including natural therapies, relaxation and meditation is usually required for adults with Schwannomatosis. 

While many people will not have their study and work affected by their NF, among others there may be a variety of challenges along the road. 

Talk with your potential employers, bosses, teachers or TAFE/ university disability unit about the things you are good at and the types of strategies that have worked for you in the past that help you overcome the challenges of your condition

There are a number of places you can reach out to for support in study and work. Contact our Support Team for a more personalised discussion. You may, however, look to access services or funding through:

• NDIS
• JobAccess
• Disability Employment Services
• Centrelink
• TAFE/University

Deciding to have children is a very personal decision which should be discussed with your partner and health care team. Without intervention there is a 50% chance of passing the NF gene on.  Below are several options you may want to consider.

• Adoption: This removes the risk of baby inheriting the faulty NF gene. 
• Donor egg/sperm: Using donor sperm if the father has NF or donor eggs if the mother has NF-this  removes the risk of baby inheriting the faulty NF gene. 
• Prenatal Diagnosis: involves testing during a pregnancy that has been conceived naturally to determine whether the baby has inherited the faulty NF gene. This testing is invasive and does have risks. Couples are left with the decision to either continue or terminate the pregnancy if the faulty gene is present on testing.
• There are two tests available during pregnancy Chorionic Villus Sampling (CVS) and amniocentesis. Both tests require that the family gene fault is known. Non-invasive prenatal testing (NIPT) is not yet available for NF.
• More information can be found on Factsheet 26: DIAGNOSTIC TESTS DURING PREGNANCY produced by the Centre for Genetics Education.
• Pre-implantation Diagnosis: uses the mother’s egg and the father’s sperm to create an embryo via in-vitro fertilisation (IVF) which is then tested for the gene fault. Those embryos that have not inherited the NF gene fault can then be transferred to the mother’s uterus to develop. In November 2021, PGD was listed on the PBS as a subsidised test allowing equality for couples with genetic conditions including NF to have the option of not passing on the faulty gene to their child rather than this only being available to couples with financial means.

Details of the genetics services across Australia can be found on the Centre for Genetics Education website.