A DEFINITIVE DIAGNOSIS
A diagnosis of Neurofibromatosis (NF) can be very overwhelming and upsetting. For some families a diagnosis comes as a shock, whilst for others, typically those who have been on the diagnostic monitoring path for a while, a confirmed diagnosis can actually be a relief.
Regardless of where you find yourselves along the spectrum, a recent diagnosis of NF will have an impact on you, as you digest and come to terms emotionally and medically with this information. So, it is very important to know that you are not on your own.
The Children's Tumour Foundation (CTF) is here to provide support, resources, community connections, advocacy and clinical links for anyone diagnosed with NF1, NF2 and Schwannomatosis, as well as for their families, carers and the wider community - no matter what their age!
Because we know there is an overwhelming amount of information to take in, and the complexity and uncertainty of these conditions can feel daunting, we have developed a road map to help you navigate through the initial phase of the NF journey. When you feel comfortable you may choose to delve further into other areas of our site including NF’s Life Stages where you will find age appropriate information and resources.
Just as NF is unique for each of you, so too will be your journey.
KNOW YOUR MEDICAL PLAN
At the time of diagnosis, it is important that any immediate medical concerns are addressed by your doctor and that plans are put in place for ongoing monitoring and/or treatment.
For many people, an initial diagnosis of NF1 may be speculated based on features of the skin (e.g. café-au-lait spots and freckles). These will not require immediate care or treatment, but nevertheless, monitoring should be implemented.
For those with NF2 and Schwannomatosis, there may be complications which need attention before anything else.
There are several key pieces of information you should have come away with which will help you map out your next steps. This plan will be unique for everyone as each person is impacted by NF differently, and will include:
- When your next appointment with your NF doctor is planned?
- How often you will need to see them?
- Who, how and when to contact them if symptoms change?
- Any other specialists you will need to start seeing?
- Who your doctor is referring you to and whether you will need to make the appointment or if it will be made for you?
- Any tests or scans they have ordered before you attend and how long the expected wait time is (roughly)?
- What, if any, treatments do you need to commence?.
TAKE SOME TIME
Allow yourself and your family some breathing space and time to adjust to the news of the diagnosis.
Everyone processes news and information differently, and you may feel a sense of loss and grief. This is very common, and a normal response to such life-changing news.
You may like to take some time to think about when and how to tell other family members and friends about the diagnosis, so that you feel supported and they help you feel more “in control”. It is also important that you allow time for your friends and family to grapple with the diagnosis as well, as it may come as quite a shock to them as well and they may react differently then you had predicted.
GET THE FACTS
You can find answers to the commonly asked questions about NF here.
Take a look at our NF1 and NF2 information sheets first, as these provide a basic overview of the condition and the support available.
We also have information about NF1 available in Mandarin.
Check out Types of NF for detailed information for each form of NF.
Searching the web: We know it is very easy to find all sorts of information online, however we do caution you to not rely on what you find out, unless it’s from a patient organisation like the CTF or a health department or hospital. Many articles may reveal a “worse-case” scenario and some have misinformation which often causes undue stress. Remember that many people with NF will not have severe complications and everyone’s journey is different.
TALK ABOUT IT
Talking with others about you or your loved one’s diagnosis can be helpful in lots of ways. Simply talking to someone can:
- Reduce your stress levels
- Allow you to feel more supported and less worried and anxious
- Help you understand how you are feeling and why
- Reassure you that your feelings and thoughts are normal
- Help you feel more in control
- Assist you to make important decisions
- Build stronger bonds with family, friends and others in the community.
It is your choice who you tell about NF and who you talk to for support. It is also your choice when to tell them. You may choose to speak with friends and family, health professionals or our Support Team. We are available Monday – Friday to take your calls and respond to your online enquiries and can put you in touch with community members who understand what it’s like to be where you are just now.
Take a look at the Resources section for information sheets that might help you.
Now that you or your loved one’s NF diagnosis is confirmed, it is important to find a good General Practitioner (GP) and Paediatrician (if under 16 yrs) who you can see regularly. The GP can help connect you to experienced NF specialists for your ongoing health management and also educate you on what other symptoms you should look out for that may (*or may not) arise overtime.
To assist you, please provide your GP with our GP Resources link which includes NF Health Management Guidelines and other key resources. Specialists lists continue to be developed for each state and territory, so please contact us for details of local NF specialists around Australia.
Connect with other NF Heroes and their families, get support and information at:
- State-based NF camps
- Community information days
- NF Sippers & local support groups
- Family Days
- Join our closed Facebook group
- Aged 13 – 25? Join our Youth Group
- Connect in at our facilitated online chats
- Join our mailing list to get newsletters that keep you updated
Also, do keep an eye on our NF Events page and social media (@ctfaustralia) for inspiring stories of our NF Heroes and other ways to connect.
There are many ways to support the Children's Tumour Foundation.
- You can get involved by hosting your own fundraising event,
- Use your time and talents for good, or
- Participate in one of our campaigns or start one of your own!
Running your own local fundraiser not only helps raise money for much needed support, clinical services and research, it is also an excellent way to raise awareness within your local community, as well as make new friends. There are lots of great tips and suggestions on our fundraise for us page.
GO TO THE GET INVOLVED SECTION
You can also take home your very own CTF Penguin, NF Hero Cape and other CTF items from our store
STAY IN TOUCH
We’re on Facebook, Instagram, YouTube and LinkedIn (@ctfaustralia), so follow us to get the latest news, event information, ask questions and also send feedback to us as well as connecting with other NF community members.