After a diagnosis of neurofibromatosis has been made some people seek more information about what the diagnosis means and where to seek support. CTF is here for you and your family and friends. We offer a range of information and support services.
From a treatment perspective doctors, unless there are symptoms requiring immediate medical attention, often take a wait and see approach. This is because all three forms of Neurofibromatosis are variable conditions and no one can predict the clinical symptoms experienced by any one individual person.
NF affects people, their families and friends differently and everyone will have a different way of coping with/managing a new diagnosis. There is no right way to cope. This page is designed to give you ideas about what resources are available to support you.
There are many ways you can get help, support and get involved, including:
Visit Patient Information for printable documents covering the various different aspects of NF.
Find a GP/family doctor that knows about NF or who is prepared to learn more about your condition and share your journey with you. Keep in touch with them regularly so that they know how you are going.
Often you will need to see more than one doctor because the symptoms or concerns you may have are best dealt with by different types of specialist doctors. Because of this, it can be really helpful to keep a folder and;
- Keep all your medical information, papers, letters, results etc in one place and take them to each appointment. Sometimes your doctor will not have received information from the other doctors involved in your health care.
- Keep a list of the name, dose and frequency of all medications you are taking so all doctors are aware.
- Have a copy of the NF1 Review Checklist to give to your doctor
- Keep track of your appointments, review dates, investigations and testing dates you might have relating to your NF in a notebook, diary or calendar.
Speak to one of our Support Coordinators who can talk with you about how things are going, provide emotional support, information, specialist referral suggestions, local resources and can connect you with local families and events.
Join our advocacy network to keep up to date about what is happening in regards to relevant government policy and funding, and make your voice is heard by contributing to campaigns and advocating for NF awareness, research and funding.
Take part in events and programs run by or for CTF. Check out our NF community events to find an event. Taking part in these programs can be a great way to help you feel empowered, meet others who share some of your experiences with the condition, and help raise awareness and sometimes funds for NF.
Contact us anytime to learn more about NF, management options, information resources, support and fundraising opportunities. We’re here to support you and your community!