Nerve Tumours UK wants to make your life with Neurofibromatosis as pain-free as possible so you can live your best life. Our specialist neurofibromatosis nurses have helped to advise us on a number of alternative methods of dealing with pain management.
These are just guidelines and options. Consult your specialist neurofibromatosis advisor or GP first.
Mindfulness is often associated with stress, anxiety, depression, and other mental health topics. But it can also be used to treat a number of other different symptoms including itching.
Mindfulness refers to a state of mind where we pay close attention to the present moment – to the external environment around you, your internal thoughts and feelings, and your physical sensations. It is about being present in the moment, noticing - but not judging or trying to alter - how you feel.
Itching is a common symptom of neurofibromatosis and can lead to irritation and pain. If you want to try some guided meditation specifically to help with itching click on the button below.
You can also use meditation during the day to help manage itching by focusing on your breathing at any point. This is a great way to become mindful in an easy way helping to focus your attention. Watch this short guided meditation video on mindful breathing.
Source: NHS - Every Mind Matters
The British Association of Dermatologists (BAD) have produced a helpful website called skin support which acts as a hub to provide a wealth of information on various skin conditions, self-help materials and support services.
If you are struggling with sleep, meditation can be a useful tool to overcome this. Meditation for sleep is a specific, guided experience that offers a natural sleep aid all on its own, allowing us to let go of the day—everything that’s happened and everything that’s been said — so that we can rest the mind while simultaneously resting the body.
Headspace have a playlist specifically for this purpose; click the button below for more info.
If you are suffering from symptoms of tinnitus the British Tinnitus Association have lots of useful information on how to deal with tinnitus on their website. Including recommending sound enrichment therapy; which uses the deliberate use of any sound to reduce tinnitus awareness or reduce the distress associated with it, they have made a useful guide.
The British Tinnitus Association also have a number of great videos on YouTube which use music or sound enrichment to help ease the symptoms, see below.
Acupuncture can be used to treat pain, stress, worries and tension. It is recommended as a safe method, following a consultation with your NF specialist or GP.
We have consulted with the British Acupuncture Council to see whether Acupuncture can be used to treat pain symptoms for people diagnosed with neurofibromatosis. They have recommended acupuncture as a safe method to help people with NF as long as no tumours or bumps are directly needled, making sure that the needles are inserted into healthy areas of the skin and that there are no clinical red flags present.
A list of the symptoms that acupuncture can help with are:
- Stimulate weakened/damaged nerves
- Offer pain relief by relieving pressure
- Help with poor circulation
- Headache and nausea relief
- General or specific pain relief
- Helping to give emotional support and addressing anxiety issues
Watch their short video helping to explain acupuncture and its benefits with pain management here:-
You can also find a more detailed article below -
If you think acupuncture may be a helpful treatment and want to find out more information on research and the practice of acupuncture, or to find an acupuncturist near you
The Association of Acupuncture Clinicians represents practitioners who have studied Traditional Acupuncture to degree level.
Neuropathic pain, sometimes in the core of the body, sometimes in the extremities, is often experienced with neurofibromatosis. Acupuncture is a holistic system of treatment that can help the body to relax, release natural anti-inflammatories and reduce pain signals.
Symptoms of neurofibromatosis can be varied and often be present before a diagnosis. They are also ones that might not necessarily lead to a conclusion that something needs further investigation such as headaches, anxiety, stomach aches, worries, behavioural issues and differing timescales of maturity. Some of these symptoms can be related to neurofibromatosis and some of them may be linked to stress.
Acupuncture can help the whole family. It can be difficult to know that someone in the family needs a little more help and understanding. Acupuncture can also be a great natural way of managing stressful situations, reducing worries and tension. Acupuncture cannot cure a condition such as neurofibromatosis but it can help with the symptoms, making day to day life easier and more comfortable.
Acupuncture is an evidence based system of treatment that has a huge amount of research behind it in treating many different symptoms. For more information as well as how to find a qualified practitioner bound by high standards of training, safety and integrity, please visit www.associationofacupunctureclinicians.co.uk where you will find a membership body of dedicated, professional practitioners ready to help.
Consult your specialist neurofibromatosis advisor or GP first
We have shortlisted a number of other useful websites that help to provide more information on understanding and managing pain:-
Gastrointestinal Stromal Tumours (GIST)
A Beginners Guide for Patients by Patients - This booklet aims to explain GIST cancer and how it is managed, for all GIST patients, their relatives/friends.Visit Website
There are only 128,000 adults in the U.K. diagnosed with ADHD. Conservative estimates put the percentage of those with the condition in the population at roughly 4%. That’s potentially 2 million individuals across the UK struggling with a number of severe impediments on their emotions, organisational and work life, finances and their close relationships.
Please have a look at the following videos to understand the issues of ADHD.
Preimplantation Genetic Diagnosis (PGD) is a type of IVF which aims to avoid passing on a genetic condition. Embryos are created outside of the body and tested; embryos not affected are then placed back into the womb in the hope a pregnancy occurs. If you would like to discuss this topic further, in the first instance please contact your GP and ask for a referral to your local Clinical Genetics Unit or a local genetic counsellor. You can find further information on the following at Guy’s and St Thomas
The Birmingham Women’s and Children’s Hospital also have a really informative leaflet below.
We advise seeing a local genetic counsellor to discuss this in the first instance.
Teacher Training and CPD materials for training providers
These resources are designed to help providers deliver training to new and experienced teachers on how to better approach and teach about difference.
Teachers have a key role to play in supporting young people with a visible difference. Good teaching practice creates an inclusive environment for students who look different and helps all students to understand and appreciate difference.
Good training equips teachers to do both of these things. Our materials are here to help you, as a teacher training provider, support trainees to better understand strategies for working with students who have a visible difference, as well as the challenges they may face.
Classroom and assembly resources to help teachers & youth workers to deliver lessons about visible difference.
Information, discussion and activities can help your pupils explore the ways in which people are different and how to accept these differences.
Our resources are for all schools, whether your institution has pupils with a visible difference or not. By exploring visible difference, we can help to change the negative stereotypes often associated with looking different. By creating inclusive schools, we can create an inclusive society which welcomes and includes everyone and values difference.
Kidz to Adultz Magazine is designed with young people, parents, carers and professionals in mind.
Every edition is packed with interesting articles, true stories, relevant promotions, advice and more. It's a great way to stay engaged with the Kidz to Adultz community and keep up to date with the latest conversations around children and young people living with disabilities.
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Here are some thoughts on how to manage worries and concerns when video-calling. It may be helpful for you if you are:
- somebody with a mark, scar or condition affecting your appearance (visible difference)
- the parent/guardian, teacher, youth worker or employer of somebody with a visible difference
What are the challenges?
The COVID-19 pandemic has prompted a big surge in the use of video-calling software such as Zoom, Teams, FaceTime, Houseparty and Skype. Many people have had to adjust suddenly to relying on these for work, as well as to socialise remotely with friends and family. Our whole lives have moved online.
This can be a great way to stay connected, but there are many reasons people may find video-calling challenging – especially if you have a visible difference. If you do, you’re not alone. From what we hear from our community, this can raise particular challenges or anxieties for those with a visible difference.
Reading should never be a barrier to learning. If you want to learn, dyslexia, concussion symptoms, ADD, low vision, or anything in between should not stop you from being able to intake information quickly and effectively. Growing up with a less than perfect education system should not stop you from being able to learn. This tool can support you in your profession, at your college, at your school or simply for private browsing.
FaceIT@home is a self-guided, online tool for adults (18 years or over) in the UK. It contains eight user-friendly sessions designed to help you learn new skills, as well as providing useful tips to feel more confident about the way you look. It is available anytime from the comfort of your own home.
All you need is a computer or tablet and access to the internet to do the 8 sessions that help you with worries and problems you might be experiencing having a visible difference.
For further details on how to access the tool either, self-referral or professional referral, visit the following link and contact Changing Faces via the number listed or by filling in the contact form.
YP Face IT (www.ypfaceit.co.uk) is an interactive web-based self-help tool for young people aged 12-17.
It has been designed to help young people manage the psychosocial challenges associated with having a condition or injury that affects appearance, and is now freely available for young people to use at home with supervision from a parent/guardian.
YP Face IT has seven weekly sessions that provide advice and support in written, audio and video formats. YP Face IT was designed in collaboration with young people, parents, psychologists, and researchers from the Centre for Appearance Research (CAR) at the University of the West of England.
Good Things Foundation is a social change charity who improve lives through digital.
Good Things help fix the digital divide alongside our community network of partners – consisting of libraries, community centres, grassroots enterprises and other social initiatives – across the UK.