Why we need your support!
Nick Rose, the former CE of the NFA explains why we need your support.
"Ever since the charity was founded back in 1982, we have been committed to supporting those with NF, their families and the professionals working with them.
We now provide many services such as information, support, advice, advocacy work and funding innovative research. Our on going challenge is ensure that everyone with NF has the full support and information they need in order that they can have the highest possible quality of life.
Without the generosity of our supporters, we simply could not acheive this. Nor could we plan for the future and seek ways of expanding our current services. I know it is a bit of a cliche, but every penny that we receive will enable us to help others. Below, you can read stories of just a few of the people we have helped."
Emma aged 11
Emma has NF1 and she inherited this from her dad. Emma is well and was only diagnosed when she broke her arm 3 years ago. The paediatrician who examined her noticed her café au lait patches and mentioned NF1. In time her dad was also diagnosed by the genetics service.
Emma's parents are worried that she is struggling at school and often seems unhappy, although she cannot explain why.
Mum and Dad have regularly attended parent's evenings, but have found it difficult to explain to teachers about NF1. After contact with the NFA, the nearest Neurofibromatosis Specialist Advisor visited the family at home and then went on with Emma's parents to meet the Special Educational Needs Co-ordinator (SENCO) and Emma's teachers.
From this meeting, Emma now gets some additional support in literacy and numeracy. She also has access to the "nurture" group to help her make friends as she has always found this difficult. She will be assessed by an occupational therapist to focus on improving her co-ordination. The Specialist Advisor wrote a letter supporting school's request for additional time in exams. Emma did better than expected in her SATs and she did not feel so pressured.
She is looking forward to starting High School in September. The Specialist Advisor will support that transition with an information session for her new teachers.
Rizwan aged 19
Rizwan is the only member of his family who has NF1. He had surgery on his spine to correct a curve and although he still has some physical limitations, he has been discharged by the hospital team who operated on him. He also has a large NF lump around his ankle which limits his walking. He has had this lump since early childhood and knows to keep an eye on it for rapid growth or if it becomes unusually painful.
Rizwan missed a lot of school because of his health difficulties and was not keen to continue in education. He has tried to find work but this has been difficult. Both his lack of academic qualifications and his physical health have been a barrier to progress. He has been feeling quite miserable and low lately, especially as his friends are leaving to go on to higher education or have found jobs.
At a recent health check, he met the NF Specialist Advisor in the clinic. The Advisor offered to go with him to a planned appointment to meet a plastic surgeon who may be able to help with the lump on his ankle. Rizwan does not have a family who can offer to do this. The Advisor spent time with Rizwan, helping him to consider what the doctor had said and what the risks of another operation might be. Rizwan was pleased to have met the surgeon and to realise that something could possibly be offered to improve his walking. He decided to delay surgery.
Getting to know him better, the Advisor asked Rizwan about his future plans. They met up again some weeks later. The Advisor had made an appointment with the local Prince's Trust where Rizwan learnt about a confidence building course for young people hoping to find employment. Rizwan was not very keen at first but agreed to try it.
From being a reluctant attender, Rizwan really enjoyed his course and especially the residential week of activities. He is now planning to start a catering course at a local college and is full of plans for the future.
Michael aged 37
Michael lives with his wife and 4 children. He was diagnosed with NF2 3 years ago.
Seeking advice from his GP, Michael was referred to an ENT specialist. After tests and a head scan the specialist told him that he could have Neurofibromatosis type 2. Michael was referred to a specialist NF2 centre but meanwhile has found out lots of information both from doctors caring for him and from the internet. Some of this has been alarming but he is philosophical and says "we just have to make the best of it. I don't know what the future brings but I am determined to make the most of the things I can do and not dwell on what I can't".
He has had surgery on the tumour growing on the vestibular nerve in his right ear and is now deaf on that side. He is aware that the tumour on the left vestibular nerve is getting larger and has been told that this needs to be removed within the next 6 months. This will mean he will be completely deaf. He has been offered an auditory brain stem implant that, together with good lip reading skills, will help with communication. He is understandably apprehensive.
He and his wife are aware that their children are at 50% risk of inheriting NF2 and, if affected, they face the prospect of similar health problems. They plan to talk about testing their children once the surgery is complete.
The family has had to make great adjustments. Their GP knows only basic information. NF2 has made an impact on many areas of their lives.
The family contacted one of the NF Specialist Advisors who visited them at home. They had so many questions. Many of these revolved around practical matters. The Specialist Advisor was able to help them to claim appropriate disability benefits, refer them to a Hearing Therapist and tell them about the rehabilitation service Hearing Concern Link in
Most important the Advisor spent time with the family answering their questions and supporting their adjustment to the diagnosis. Michael and his family have a supportive family and good friends but feel isolated by their situation. No-one seems to understand what deafness means and the impact it has had on their lives. They are very concerned about how to talk to their children about NF2.
Michael said " I feel as if everything is slipping away from me. I don't belong in the hearing world …but I don't belong in the deaf world either. I am not sure what my future is. The one person who seems to understand about it is the NF Specialist Advisor. She has been so helpful".
The UK’s leading authority on Neurofibromatosis