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So where's the strategy?

NeuroFoundation.jpgPhil Hunt & Steve Bassam on ministerial warm words on NF Type 1

The first ever parliamentary debate on Neurofibromatosis Type 1 (NF1) took place earlier this week in the Lords Grand Committee. As Labour parliamentarians we had been prompted to ask for the debate by parents with children suffering with NF1 and two excellent Labour parliamentary candidates Sarah Owen (Hastings & Rye) and Vicky Groulef (Reading West).

For those unfamiliar with NF1, it is best described as a condition which is genetic, incurable and affects the skin and leads to the development of visible and non-visible tumours. At its worst, it is entirely debilitating; at best, the condition can be managed, but is lifelong. It leads to severe disability, constant pain, itching, cancers, epilepsy, high blood pressure, bone abnormalities, speech and language problems, dyspraxia, learning and behavioural difficulties and mental health issues. The condition is unpredictable – and it mutates and changes all the time.

It is often said that NF1 is the most common but least known of specialist conditions. Across Britain there are 25,000 sufferers, and 1 in every 2,500 births give rise to NF1. This compares with 5,000 people suffering at any one time from MND and 10,000 with Cystic fibrosis. The major problem with NF1 is the failure to identify sufferers early enough and then provide for the care and management of the condition. Frequently it is not picked up until late childhood and by then many of the disadvantages that come with the condition are entrenched.

The key is early diagnosis. The café au lait examination at birth and early record keeping is critical to ensuring effective treatment and support. In preparing for the debate we met sufferers and families and listened to their concerns. What they told us was that despite brilliant work in the centres of excellence in Manchester and London there is no effective national strategy.

Sadly, Health Minister Earl Howe, in setting out the government’s approach in response to the debate, confirmed that impression. In the two years since NHS England has taken over national commissioning for specialist conditions little has happened. A review being undertaken by a task force set up last year appears only to be at a consultative stage in its work. The chaotic and costly reorganisation of the NHS following the Health and Social Care Act 2012 has delayed the bringing forward of a cohesive strategy for specialist conditions. Warm words, a consulting task force, videos at the planning stage and talk of awareness raising among health professionals alone is not a national strategy or plan. Much of the good work put in place to bring coherence by the last Labour government appears to have been sacrificed and lost.

In the debate we invited the Minister to meet with the Neuro Foundation and work across Whitehall departments especially with education. We asked the government to maintain funding for the specialist centres, ensure that research gets into the national plan and also support work to end the sense of isolation that those with the condition suffer. In our view, that is the very minimum required to make progress and counter the neglect and ignorance the condition meets at an institutional level.

Lord Phil Hunt of Kings Heath is Shadow Health Minister and Lord Steve Bassam of Brighton, Opposition Chief Whip in the House of Lords

Published 15th January 2015

For more information on NF Type 1, visit the Neuro Foundation website: http://www.nfauk.org/

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commented 2015-02-06 13:04:47 +0000
Hi my name is Isobelle I am 10 years old and I have NF1, life with NF is not easy I have tumours growning all over me the one that hirts the most is the one on my spine, my life has changed so much I find it hard to do the things I done before I cant ride a bike anymore this makes me sad.
Every day I wake up and check to see if any more lumps have grown.
I am at the hospital alot so I am missing school today I am ment to be a school but I am in lots of pain with my legs and back I love school I just want to be there.
Having NF is very hard as lots of doctors dont understand of you go to them with a cold they say thats because you have NF.
We need to teach doctors this is not the case only because you have NF they still should look after you, I think only my NF doctor and nurse understands me.
School was very hard because I was very small at first and found it very hard to fit in my now the school have read up on NF things are getting better.
I would just like to get better and not to take loads of medicine and injections to make the pain go away.
I find it hard to sleep as I am in pain and when I see my doctors in the hospital they dont understand, 2 times now they have all came in my room because they have not seen NF before I like that they want to know but maybe they should all learn about it so we with NF dont feel like strange and different. Thank you.
commented 2015-02-05 21:08:04 +0000
My little girl was diagnosed with NF1 just before she turned 2. I always felt that something was wrong; development was much slower than her older brother but it wasn’t until we moved home that we got a diagnosis. We went from, these cafe au lait marks and development delay are just part of her and there is nothing to worry about to the new health visitor (on her first visit) saying that our daughter needs more than she can offer and will refer her on to specialists. We got a diagnosis from Manchester and she has had many appointments with lots of professionals but very little coordination; same assessments but no care planning. Lots of chasing up physio appointments. NF1 is still unknown to many medical professionals ; we had one doctor at our local urgent care centre read about NF1 from a book when we took her in when she could not walk one day and on another occasion one nurse was adamant that NF1 doesn’t exist as she had not heard of it. Our main concern is regarding her education; as the school has no idea regarding NF1 and as each term arrives, she becomes more aware that she is different. We welcome all discussions to raise awareness as managing NF1 is difficult enough without having to explain and even justify help and support from medical and educational personnel. Thank you x
commented 2015-02-05 14:10:32 +0000
My son has Nuerofibromatosis type 1 and was diagnosed at 8 months in Australia on our return to the UK I felt the medical staff were very uneducated in the condition and treatment being over several hospitals was not synchronised meaning scans were done at the same trust but different hospitals within 24hrs causing undue stress.
The support and guidance we received from Gayle Seymour ( an nf advisor) was invaluable, she went to the schools to enlighten them on the condition and understand the difficulties my son had and helped them to meet his needs.
The profile of this condition needs to be lifted so the right strategies are but in place to support the needs of those that require it both physically and emotionally
commented 2015-02-04 22:29:54 +0000
My daughter is 2 years old and has NF1. She has over 30 cafe au lait spots around her body. I wish that they could make doctors, midwives and health visitors more aware of NF 1 and the characteristics to look out for so that people can get diagnosed earlier. When my daughter was just 3 weeks old I noticed brown marks on her body spoke to my health visitor who advised me that it was normal at 4 weeks I seen a different health visitor who asked why my daughter was covered in bruises and I had to explain to her they weren’t bruises that they are brown marks and had already told the health visitor the previous week so she advised then I go and see my GP. So at 5 weeks old I took her to the GP who said these marks are normal and just a discolouration of the skin. So being a first time mum and having no family history or even knowledge about NF1 I took what the GP told me! At 6 months old I notcied that she had now developed more and more brown marks and counted over 30 so I immediately made an appointment to see a different doctor. I explained to him what had been said to me previous and he told me straight away that these were cafe au lait spots and she is getting referred to the Neurological Science Unit in Alder Hey children’s hopsital. He also asked if we had heard of NF and openly admitted there wasn’t much he could tell me and instead told me to visit The Neuro Foundations web page! So it was through The Neuro foundation website that we found out all about NF1. Since then our daughter has had her appointment, had her eyes checked, had X-rays and we have seen the family genetics. She has been diagnosed with NF1. But still I find myself explaining to the doctors at our medical centre what NF1 is and even had one GP Google NF1 whilst I was sitting with her needless to say I have never taken my daughter to her again! I think more education and training is needed for doctors, midwives and health visitor so that the parents and children have all the help, support and advice they need!
commented 2015-02-04 22:17:15 +0000
My daughter is 2 years old and has NF1. She has over 30 cafe au lait spots around her body. I wish they could make doctors, midwives and health visitors more aware of NF1 and the charcteristics to look out for so that diagnoses
commented 2015-02-04 17:40:00 +0000
My daughter is 2.5 years old and has nf1. She has a large plexiform tumour across her face, behind her eye, and next to her brain.

She has so much damage to her eye that she is going to have it removed.

I wish they could make doctors, midwives and health visitors aware of this condition so people can be diagnosed earlier and receive the support from their local GPs etc, not just a specialist doctor

Even at 2.5 years our story is long winded, every few weeks we attend one of 7 hospitals involved with us. We have also had physio, speech and language, dieticians and a visual support worker working with us. We have had to educate nearly all the medical staff we come into contact with about NF1

I hope this debate brings about changes!!
commented 2015-02-01 18:03:14 +0000
Will nf get recognised in Scotland as i suffer from NF1 and NF 2 I CAN’T EVEN GET IAM ON JSA
commented 2015-01-31 20:59:25 +0000
Maybe now it will get recognised as a disabiliity i suffer from nf1 and nf2 iam now 42
commented 2015-01-30 04:46:50 +0000
Thank you so much to Lord Bassam and Lord Hunt for your ongoing support of those with Neurofibromatosis. As you say, so much more needs to be done to improve their quality of life and quality of care. It is a heart breaking and relentless condition affecting not only every area of the person’s life who has this condition but also the family and friends around them. We are very grateful for all of your campaigning on our behalf.
My son, now 15, wasn’t diagnosed with Neurofibromatosis 1 until he was 8 years old, despite being covered in café au lait marks at birth. It was a terrifying condition for him to be diagnosed with and if it wasn’t for The Neuro Foundation, there would have been no support out there for me. As it was, as their resources are so limited, there were no specialist advisors in my area so I mostly read information on their website and read their newsletter. I felt very isolated and disconnected.
Thomas has a continuous round of consultations with numerous specialists from different disciplines at different locations. This is worrying, tiring, time consuming, stressful and frequently involves unpleasant examinations or tests. I have to coordinate all his care and ensure that all the relevant specialists are kept updated about his situation. He currently has 7 tumours in his chest area, 3 on his lungs as well as numerous small skin neurofibromas. He injects himself daily with growth hormone because he is very small for his age and stopped growing when he hit puberty.
His biggest challenge has been trying to fit in with society, especially with his peers at school. Due to his social skill difficulties, his impulsivity and the fact he is short with a big head and different, he has been relentlessly bullied, including numerous physical assaults. It is heart breaking as all he wants is to fit in, be liked and accepted and to have friends like other children.
He has struggled hugely with education from Primary school onwards. I had to fight every step of the way to get him support. In the end I had to attend a day’s trial at the Special Educational Needs and Disability Tribunal in London in order to get him a Statement of Education. This was incredibly demanding, time-consuming and stressful, especially when I should have been spending this time focusing on trying to support Thomas and find solutions for all his many and varied difficulties and challenges. Despite being very bright, his academic achievement still does not reflect intelligence.
Thomas has very low self-esteem. He used to ask ‘why am I the one with all the difficulties?’ That was until he attended a camp for children with Neurofibromatosis 1. It changed his life – and mine. To spend a week being ‘part of’ and ‘the same as’ rather than ‘different from’ and ‘isolated’ was so moving to watch. He was also able to talk about his condition with the other children and be ‘normal’ for a week. For me as a parent, it put me in touch with other parents who had the condition which really has changed my life – to share this heavy burden which NF1 puts on the shoulders of the whole family.
Living with NF1 is like living with a time-bomb ticking away inside someone you love dearly. Living with NF1 has daily challenges with behaviour, self-esteem, education, motivation, health. Living with NF1 impacts the whole family – it can consume your energy, your mind, your activities, your days; it can eat away at you bit by bit until you feel there’s nothing left.
And YET despite that, those living with NF1 can BE remarkable and DO remarkable things. BUT they need MORE support, MORE recognition, MORE awareness, MORE facilities . . . just MORE.
Finally we feel that there are people out there fighting for us, people who have the influence to bring changes to those who live with Neurofibromatosis. So again, THANK YOU to Lord Bassam and THANK YOU to Lord Hunt and THANK YOU to Sarah Owen and Vicky Groulef who are working tirelessly to support us – we can’t thank you enough.
commented 2015-01-29 21:02:06 +0000
I was diagnosed at age 32 while giving birth to my second daughter by a fetal medicine doctor during an emergency scan. He noticed the neurofibromas on my belly which my midwife said were just skin tags, nothing to worry about and would disappear after birth. Since then I have been told by my specialist advisor at the Neuro Foundation that I should have been diagnosed in childhood as I am a classic case, many cafe au lait marks, scoliosis, late walking etc. Education of health professionals and early diagnosis is key. Simple checks such as looking for cafe au lait marks at early years checks are easy, midwives could be trained not only to look at for these (on babies as well as mums) but also to check for the appearance of neurofibromas (I had 2 pre pregnancy and now have more like 200). If we had known about my NF before having children we could have used genetic counselling and would have been appropriately monitored during labour. After the birth of my first daughter I had severe vertigo, had we of know about my NF then I probably would have been rushed in for an MRI. At my annual eye check last year, the optician did not know what NF was and I had to fight to get it recorded on my notes. There just needs to be more awareness of what NF is and the issues it can cause.
commented 2015-01-29 16:37:05 +0000
My story is pretty much similar to most of the comments. lack of awareness, lack of support, lack of knowlege ……… So I decided to try to do something about it…. I know many of you have contacted your MP’s about NF and got nowhere, indeed my own MP did nothing. I was lucky, It wasn’t until I decided to write to my Labour Parliamentary Candidate Sarah Owen who took an interest that things started to happen. Reading all the posts has only proved how important this debate was and the help that we are getting from Lord Hunt and Lord Bassam is. The Need for monitoring the Cafe Au Lait marks seems an obvious way forward, as well as training for the Health Professionals to undestand their significance – I realise there is so much more, but things take time and we must start somewhere. We shouldnt have to fight every day in every aspect of our, or our childrens lives as well as dealing with this dreadful condition – and then have the very people who should be helping us – look at us blankly. I personally want to thank Sarah Owen, Lord Bassam and Lord Hunt for doing all they have, and I can assure you they have a genuine interest in getting some changes made. So however bad things are for you there are people who are fighting your corner. There are too, some wonderful health professionals working in NF – but nowhere near enough. and a PS dont ever give up because at some point someone will listen to you.
commented 2015-01-28 22:58:28 +0000
I would also like to add that my daughter has had a lump removed from the top of her foot (quite large mass), had the growth plates taken out of one leg knee because one of her legs was shorter than the other. Again the leg descrepancy was only noticed by chance when a doctor noticed that she stood with one foot flat on ground and one foot with just the toes resting on floor to take up the length difference. We were advised not to go for leg length procedure rather we should restrict the growth of the longer leg. This procedure did not work for her as she is short for her age and has now stopped growing. She has had a tumour removed from her brain about 3 years ago. At 3 months old she had open heart surgery and spend 1 month at Great Ormond Street hospital. Not one surgeon or doctor or nurse in intensive care picked up on the fact she had these birth marks. WHY DID THEY NOT PICK THIS UP EARLIER. All midwives & doctors in maternity should be trained to look for these birth marks or what to do if they suspect cafe au lait.
commented 2015-01-28 17:11:28 +0000
At 12 weeks my daughter was referred to a Consultant Paediatrican for a hip check. The Consultant noticed her multiple cafe au lait marks, made the appropriate investigations and she was officially recognised as having NF1 a year after her first appointment with the paediatrican. At the same time her 35 year old father, who has had the cafe au lait marks all his life, was also diagnosed. This was as recently as 2013. I now have 2 more children (I was pregnant before the diagnosis was confirmed), one of which has also been confirmed with NF1 as he has multiple cafe au lait patches. In both my children the cafe au lait marks appeared within 2-3 weeks of their birth. During the 12 weeks it took to see the Consultant Paediatrican my daughter was seen by our family GP, and by several different midwives and health visitors. All of these medical staff saw her undressed and not one commented on the cafe au lait marks. The lack of awareness that we have so far experienced within the medical community is quite shocking. In the debate the red book that all parents have was suggested as a means of aiding early diagnosis. This seems such a simple method and one which would be relatively low cost to implement. Children have 6-8 week checks, 9 month checks and 2 year checks. All it would take would be an extra line on the form completed by the GP/health visitor asking whether the child had multiple birth marks or cafe au lait marks – if the answer is yes then that child gets referred to the appropriate medical professional. I feel that we are so very lucky that this condition was picked up early. My children now get annual check ups with the Paediatrican as well as regular ophthalmic consultations. We take comfort from the fact that now they are ‘in the system’ the hope is that if conditions do develop they will get picked up early and managed and will therefore be less detrimental than they might otherwise have been. My husband is not so lucky – as an adult diagnosed with this condition he has received no support at all. As a parent, the unpredictability of this condition is terrifying and all we can do is hope that our children will not be too badly affected. However, now that we know about this condition we can be alert for problems so that they can be managed before too much damage is done. I am so pleased that someone has brought this to parliamentary debate. The red book suggestion should be implemented and general awareness of this condition amongst medical staff needs raising. I would also like to see government funding towards the Neuro Foundation – this is the organisation that has provided me with all the information, in fact it is the place the Consultant Clinical Genetist referred us to – it seems the NHS relies on outside help in this area!
commented 2015-01-28 09:19:16 +0000
I am a 40 year old male. I was diagnosed about 8-10 years ago. My daughter who is now nearly 18 years old was diagnosed by chance when being while seeing doctors for something else. I have since gone on to have 3 more children. Had i been diagnosed earlier or my daughter i would probably not had any more children after the first as i would have been aware of the risks. Luckliy the other 3 children appear not to have the condidtion. In my youth i was always in and out of hospital sometimes 2-3 times within a couple of months. i had various test for my illness and not once did any doctor link the cafe au lait to me having NF1. After diagnosis things moved fast for us and we were monitored regularly especially my daughter. In the last couple of years the contact has been lost. No appaointments are sent to us and i have to contact them. Locally the doctors dont know what to do and often my calls are never returned by the specialists. I am always in pain all over and have limited work capability. i am often depressed when i look at my body. luckely i dont have too many on my face at the moment. I am worried for my daughter as she is now concious of her condition but probably does not understand how bad it might get for her. No treatment is forthcoming for cosmetic reasons which leads us to getting depressed. But for the the depression the doctors are happy to treat with anti depressants. What is the point of the specialist if they wont/dont/cant remeber to keep seeing us and listening to our concerns. I have considred going abroad for treatment but it costs a lot so i will save my money to get treatment for my daughter if the need arises and i will go without…….#show us mercy
commented 2015-01-27 22:28:26 +0000
I was diagnosed in the mid 1960s. In those days there was no support for my parents and no information. I saw a paediatric doctor once a year and that was it. I grew up feeling different and left out. The bumps grew and grew and I didn’t like showing my skin. I got unkind comments from other children which affected my confidence. I now hate showing my skin as I am literally covered. I get stared at and people are often unkind to me I have recently been turned down by the CCG for removal on the grounds that it is on cosmetic. I have recently appealed against this decision and am hopeful that it will be successful. I often hide my neck by wearing polo neck jumpers and don’t buy pretty tops etc because I am too self conscious to wear them. I would love to wear these and also would like to wear an evening dress. This may sound trivial compared to some peoples NF problems but I have thousands of bumps all over me and am terribly self conscious about them. I am sick of being stared at. As the condition is progressive and there is no treatment to stop the bumps growing I will look worse and worse as I get older. Many adults with NF are single and have to bear this condition on their own – they also don’t want to pass the genes onto the next generation.
commented 2015-01-27 17:13:15 +0000
We were one of very few families who got a diagnosis very early on. we had gone to the dr’s for something minor but our GP noticed the café au lait spots on my daughters chest. She enquired about them and said she wanted to refer her. This was at 6 months old. We were very lucky that our dr who works in a military practice but is a civilian was able to spot it. Our daughter currently has a tumour behind her eye which we would have been none the wiser about for a long time. Early diagnosis is so key for families and I am certain that very few GPs know enough about it to recognise the early signs. For such a ‘common’ genetic condition, too little is known by professionals. we hope and pray for more help and publicity about this in the future. This is a fabulous step forward and hopefully even more will come of it. Thank you.
commented 2015-01-27 16:15:07 +0000
Some close friends have a three-year-old child with NF1. I had never heard of the condition, but now know a little about it from my friends’ experiences. Luckily they had a chance early diagnosis for their son, but it is not the case for many families. More needs to be done to raise awareness for the general public. We also need training for GPs and other healthcare professionals, and standard checks for Neurofibromatosis should form part of the routine early development checks for all babies.
commented 2015-01-27 14:42:08 +0000
Well done to everyone who has fought for this. I had no idea anything like this was being done for NF patients. I was diagnosed with NF1 at a very early age and was lucky enough to have no major NF related issues, until now ( I 29). I had never really been checked for complications & asked for a referral a few times only to be told not believe everything I read on the internet.

Since October they found a large NF Tumor on my Sciatic nerve. Its attached to my pelvis and runs along the nerve and around my Femar. Its been a quick few months with scans and referrals. I have been back & forth with different Doctors all with the same answers., that they just “Don’t Know”. I have been told a few scenarios around surgery. The worst outlook being amputation, they still however, just don’t know. Having more knowledge on the condition is just the start, I understand its so varied the knowledge base could be never ending, however more that what they have just now is a start.

Help, support and facts is what we need to start. Care plans for babies & children at risk is a must. to avoid getting to my age discovering complications. Great start !!
commented 2015-01-27 12:49:07 +0000
I work in a medically-related field and consider myself reasonably well-informed, but I had not heard of neurofibromatosis until my nephew was diagnosed with NF-1. From my family’s experience, and the comments posted here, what seems to be a common theme is the lack of knowledge amongst health professionals of this relatively common genetic condition. There is very limited access to the specialist teams required – please help with increasing the knowledge of, and about, this condition, and enabling those who need it access to more specialist teams.
commented 2015-01-27 12:03:38 +0000
Our daughter was diagnosed with NF1 when she was 8 months old when a HP noticed her cafe-au-lait patches (we were in hospital for an unrelated condition).

I think the major issue, apart from the general ignorance from HPs, is continuity. Each and every time I see a GP, paediatrician, audiologist, urologist, or teacher, I begin at the beginning and tell them what (little) I know about the condition.

In fact, at our very first appointment with a consultant paediatrician, he openly admitted that we would know more about this condition than him. This was after I had pushed for a face-to-face appointment following his comment as we were discharged for the unrelated hospital stay: ‘I think she has a condition called Neurofibromatosis. It causes curvature of the spine and BP problems. Google it.’ (!). Obviously, Dr Google was not gentle with us.

For a condition more prevalent than Cystic Fibrosis, this lackadaisical attitude is pretty staggering. And not at all acceptable.

Those with NF deserve better.
commented 2015-01-27 11:50:10 +0000
Our grandson was diagnosed with NF1 very early, at the age of only a few months. The diagnosis was only due to the constant effort by his parents in attempting to identify why his body had cafe-au-lait marks. Initially his health visitor, 2 general practitioners and a paediatrician, all told his parents that the marks were nothing to worry about. A meeting with a further paediatrician eventually led to a diagnosis. Why do so few professional health workers know so little about the condition…

As a family we have recently become more aware of the excellent work the Neurofoundation charity is performing and providing within this area. But it appears that the National Health Service itself is providing very limited support to the individuals who suffer with this complaint.
commented 2015-01-26 21:46:52 +0000
Our daughter was diagnosed aged 5 (6 months ago), primarily due to a plexiform tumour which had appeared on her back. and we were very lucky to have a GP who recognised that there was an issue who referred us to a paediatric consultant who diagnosed her straight away, and ordered MRI scans due to a squint & the plexiform. Thank goodness he did as the MRI showed brain stem and mid brain tumours as well as optic nerve tumours. We were referred to GOSH and saw a specialist consultant there, who deals with NF related tumours, very quickly and he set up eye tests etc to see if the optic nerve tumours were causing a deterioration in sight.
Within weeks of this first appointment at GOSH our daughter rapidly lost all mobility on her right hand side due to the brain stem tumours and was put onto a 18 month course of chemo to stabilise these, and her optic nerve tumours which they subsequently discovered have deteriorated her eyesight.
I think we are very fortunate (!) to live where we do, where the standard of care has been excellent so far. If she hadn’t have been diagnosed and seen to quickly she may well have lost her eyesight like many other children’s stories on here. (we were actually referred to a ophthalmologist in May for her squint – the appointment finally came through in Oct AFTER we had started chemo!!).
We have got a long long road ahead of us both with this round of chemo and whatever the future holds for her. It has been a rollarcoaster 6 months as we went from a pretty shocking diagnosis of NF1 (not inherited) in July – to brain tumours/chemo/our daughter in a wheelchair within 2 months. It has been very tough and to be honest we have not really gotten our heads around the issues we may face with NF1 in the future, our family has enough to cope with right now!
Although we have had excellent care so far, as I say I think we are in the lucky minority. Outside of GOSH i have met only a couple of people with knowledge of NF1 (teachers and medical people mainly) but the vast majority of people haven’t a clue what it is and what it means. The internet doesn’t help. I tell everyone not to look it up, unless they look on the NHS or neuro foundation websites!
I think it is great that people who have tirelessly worked for NF1 sufferers like our daughter are finally getting somewhere and MUCH obviously needs to be done. Many of the stories on here are heartbreaking – and much of the heartbreak could have been avoided with an early diagnosis and plenty of support and appropriate knowledge for family and child from day 1 and continuously, not just until they reach 18.
commented 2015-01-26 21:15:27 +0000
Judith thank you for sharing your story, we’re not meant to outlive our children. I am so sorry for your loss and I hope your comments are noted by The Lords.
commented 2015-01-26 21:03:20 +0000
My two sons were diagnosed with an NF1 by a well-informed GP in childhood. My husband was also subsequently recognised as having the disease. The boys were monitored by a local paediatrician and received excellent care at Birmingham Children’s Hospital when suffering precocious puberty and optic gliomas. Unfortunately when their care was transferred to adult health services there was no one department with overall responsibility for the monitoring for their condition and they seemed to slip between gaps in healthcare departments. Unfortunately my eldest son became ill earlier this year and he was diagnosed with malignant peripheral nerve sheath tumour, a type of cancer commonly associated with NF1. St Mary’s in Manchester was able to support us through his treatment but only at the end of the telephone. We feel that had Birmingham had its own specialist NF clinic, a routine screening would have spotted the tumour and diagnosed the issue earlier, before the spread of the cancer, and the prognosis may have been better. He died in September aged 24 years.
More research is urgently needed into the diagnosis and treatment of an F1. Whilst our experience in childhood was excellent this is not always the case and there are still miles to go before the disease can be diagnosed and treated effectively. Please support those with NF
commented 2015-01-26 14:08:37 +0000
From the age of 18 months I had concerns there was something wrong with my son. When I spoke to our health visitor with concerns that his head was large, I was told ’he’s fine, just get used to buying him a big hat!’. When he was finally diagnosed with NF1 at the age of 5, the same health professional confirmed he knew little about the condition. This surely highlights the fact that even amongst professionals, more awareness is needed of this terrible debilitating condition. PLEASE HELP us with more funding & increase the awareness of NF1. Thank you.
commented 2015-01-26 13:59:12 +0000
I am glad that the many issues surrounding NF1 are beginning to be recognised in parliament but, as all the comments below show, we have a long way to go.

Our beautiful son was diagnosed with NF1 when he was a few months old. We noticed his cafe au lait marks early on and raised them with our health visitor, 2 GPs and a paediatrician, all of whom told us they were nothing to worry about. A chance meeting with another paediatrician finally led to my son’s diagnosis. The lack of knowledge of this condition by health professionals is truly worrying.

As a parent, reading the statistics, I worry greatly for the issues my son may face as he gets older. The Neurofoundation have been a great support and the debate is a small step in the right direction. I hope enough momentum is gained to lead to changes in how this disorder is diagnosed and dealt with.
commented 2015-01-25 21:06:31 +0000
When i was 18 months old my Mam was told i have Nf1. At the time she didn’t receive any information about the condition so i went through life unaware of the problema Nf can cause.
At 21 i gave birth to my daughter unaware that i could pass this onto her. Sadly i did. Then at 27 i started having problems with my knee which led to me having to have surgery, i was left with drop foot and have to wear a splint to support it.
When my daughter was in school any information we had about Nf was given to the teachers and my Mam also explained it to her teachers as it can lead to learning difficulties.
commented 2015-01-25 19:17:31 +0000
our daughter has inherited this disorder from her birth family. She shows certain behaviours and has learning problems, poor eye hand coordination and clothes next to her skin have to be very soft. Katy also suffers with painful limbs especially at night. This disease was once known has Von Recklinghousens disease or neurogenic sarcoma. Unless you are fortunate the chances are you will develop problems . It is important that more help is available when needed and hopefully treatment with wider knowledge of this condition. I watched this debate in the House of Lords and was dissapointed to see so few members, but well done to Lord Hunt and Lord Bassam for their support. Incidentally I have written to our MP Simon Hart Carole Lloyd.
commented 2015-01-25 12:34:40 +0000
I have never done this before and just wanted to mention that I am doing this for the sake of my daughter, Zoe, and I. We both have Neurofibromatosis type 1. It is an
extremely debilitating illness that slowly but surely destroys one’s body. I have had numerous surgeries over the years on various parts of my body, including my spine.
I was diagnosed with NF in July, 1989…
However, that was not the beginning of suffering, I have been called names and stared at for years, just because I looked different. In June, 1989 I was rushed into
hospital with a very bad pain in my neck, I was only 24 at the time… It was hard having to cope with all of this whilst trying to raise two young children with special
needs: Emma was born 6 weeks prematurely, weighing 4lb 1oz, and Ben was born 8 weeks early, weighing just 3lb 13oz. I never got any support from their Dad, who
was a total control freak and used to abuse me physically and mentally.

I distinctly remember how shocked I was when the doctor told me that I have Neurofibromatosis and it is a type of cancer. I was given a blood transfusion and
afterwards sent home. They have not mentioned at the time that it was hereditary and my children might also have it. This has proven to be the case, as all of my
children have NF, daughters have type 1 and my son has type 2.
What followed that initial diagnosis was the start of endless tests and doctor’s appointments, until I finally got told that NF was not a type of cancer, and that a newly
developed swelling on my right foot was, in fact, a tumour, and it was not the only one. There were plenty of others, smaller ones, which would have to be removed in
future, as they would grow bigger and start causing pain.

The new chapter of my life started when I met Zoe’s father. After 7 years of living together we decided to have a baby. Selfish, I know, but we have done our
on NF and the risks involved, and thought that we knew what we were getting ourselves into. Zoe was born by C-section in December, 1993, weighing 4lb 4oz. We
almost lost her at birth and she was a very sickly baby right from the start.
One the most terrible moments came when she was 8 months-old. She was sitting in her high chair while I was feeding her and all of a sudden the whole left side of
her face dropped, as if she was having a stroke. We rushed her to hospital and were told that she had an epileptic seizure. From that day her development has
significantly slowed down and she struggled to speak, walk, sit up and do other things that a child should be able to do at that age. Walking was made difficult by a
tumour in her foot, she kept having seizures (up to 12-13 a week), and we were in and out of hospitals on a regular basis.
In 1995 Zoe’s Dad took a job driving a taxi to bring in some extra money for Christmas. Few weeks later I started noticing that he was constantly talking about his boss’s
daughter and asking me peculiar questions. I confronted him and after arguing he has left, saying that there was nothing going on, but that very night he checked into a
B&B with her. That was the end of our relationship.

Rebuilding my life again was not easy. Zoe was still having fits and pains. The pain in her foot got unbearable, according to one of the doctors her foot was “f**ked”,
these were his exact words. Since walking was not an option, she was getting around shuffling on her bottom. Her Dad, at first, was there for hospital visits….

In 97/98 I attempted to find that I have met a few guys from a dating website and also met my future best friend, who did a good job trying to convince me that not all
men are “lying arses”. We would talk for hours when he was not busy driving his truck. Back then I was madly in love with him. I still love him dearly but just as a friend.
Him and his wife are one in a million.

In 2002 I had to have a tumour removed from my hand as the biopsy results has showed up some cancer cells. On the very day that I had the operation, my then-
boyfriend hit me and just like that another relationship ended with a break-up.

In July, 2003 in search for a better life, I moved to West Sussex. It has been a happy time until Zoe’s fits became more frequent and the tumours on her foot and ear
started hurting her more. Zoe’s Dad knew where we lived but never came to see her. I had to move again after an incident where my ex-partner held Zoe and I at knife
point until police arrived and took him away. He kept saying that if he could not have me, then no one would.

2008 was going to be a good year, or so I thought. I learnt to drive and passed my driving test at first attempt. In April, 2008 Zoe had an operation to remove the tumour
from her ear and her Dad was there for her. That was the end of “good” year. Next day on the way home, the ambulance hit a lamp post and we both got whiplash.
In October, 2008 Zoe was supposed to have the tumour on her foot removed. The week before Zoe’s respite carers took her to Brighton to help her take her mind off
forthcoming operation. That is when our lives have changed for the worse. When I went to collect Zoe from the carers after their trip to Brighton, they told me that
apparently her neck was hurting, putting it down to a bumpy ride on a roller-coaster. I put her in the car and headed home but when Zoe started crying from pain, I
pulled up at a shop to take a look at her neck. She had a strange looking lump behind her ear and I decided not to waste time and go straight to A&E, where a young
doctor, without a doubt, saved her life by getting 4 different doctors involved (one of them had to come from 40 miles away). A CAT scan showed that there was some
blood collected behind her tumour and the doctors decided to keep her overnight for observation. Zoe’s Dad briefly visited her in hospital this time. At 3 a.m. blood
suddenly started pooling in Zoe’s neck literally drowning her. The doctors took her to an operating room to perform tracheotomy to help her breath but accidentally hit
tumour and what meant to be an hour-long procedure turned into 7 hour-long operation. I was very scared but had to put on a brave face for Zoe’s sake. She would
have realised how bad the whole situation was if I had given in to panic and fear. She was on life support for 11 days and had 4 operations before they let her go
home.We still didnt know how the accident had put her back, She returned from the hospital on the 23 of November, 2008. She could not walk, eat or drink. She had a
tube down her nose for feeding and drinking, and every time she was sick it would come out and we would have to drive 12 miles to the hospital to have it re-inserted.
After a while I learnt to re-insert it myself, and believe me, it was not a nice job.

When the tube was no longer required, Zoe had to learn to eat and drink again, it was proven to be very difficult because even the smell of food would make her sick.
She hated the way she looked and that people were staring at her.

In February 2009 we went to a hospital for a 3-day assessment and I kept asking for PEG tube for Zoe and when she was being discharged I was told that she could
have it, but it has still taken 3 months of arguing with doctors in London to get it, as they did not think she needed it. Having PEG tube certainly sped up her recovery.
Slowly but surely she started drinking water and eating soups and ice-cream. She also got her tumour removed from her foot as she had not walked since Oct 08
because when waking up in the picu she though it was because of her foot she was in pain

In 2010 my foot started hurting a lot and according to doctors, all they could do is to amputate. Our priority was for Zoe to get better first, so she started pushing herself
a bit harder and it has taken several months of eating mashed food first to eating solid food and taking her pills, and in December 2010 when she no longer needed PEG
tube she told me to have my foot sorted out.

In March, 2011 I met Robert, the love of my life and a month later I had my operation done and after 4 days of stay in hospital, instead of planned 2 weeks, I came home.
Zoe’s Dad looked after her while I was in hospital and Bob was there for me, supporting and caring.

I tried to be self-sufficient as much as I could because Bob lived in Folkstone and had a son there, but since I was not getting much help from friends and family in
Selsey, he moved in with me in October, 2011. We had a falling-out with my older daughter, my sister and some friends. We moved to Midhurst as we needed a 3-
bedroom house and I only had 2 bedrooms. The new house had a lift which was rendered unsuitable for use 2 days after we moved into the property. So from March,
2012 to October, 2012 I had to go up and down the stairs on my knees. I fell 6 times on those stairs, badly hurting myself. It was a difficult enough period for all of us,
when, out of the blue, Bob’s son decided to go back and live with his mother, Bob got completely crushed. I had to hold us together and what made it even worse is
his ex-wife was determined to destroy our lives. She was making threats and we decided that the best thing for us would be to move away from it all. We moved north to start a new life.

Shortly after the move, Zoe found out that her Dad got married and did not invite her to the wedding. She got very depressed and her self-esteem has received a
serious blow.

As to me, I have had some tough times but I am still here smiling and getting on with it. My goal is to raise awareness for Neurofibromatosis and make friends on the
way. We really need a good support network for people suffering from NF.

Bob and I hope to get married this year and I cannot wait to have Zoe as a bridesmaid. In addition, Bob and I turn 50, and Zoe turns 21 in 2014 and I fully intend to make
the best year yet.
commented 2015-01-24 22:59:40 +0000
When my daughter was diagnosed at the age of 18 months in 1977 we were not told anything about the condition in fact we were told when and if anything ever happens we will go into detail about it then as she has more chance of getting ran over by a bus than developing any symptoms ! At the time she only had cafe lait spots no other symptoms .
At the age of 27 she started developing more symptoms but by this time she already had a daughter of her own as she was not told that she could pass nf on to a child .
At this point we were put in touch with a specialist nurse from the Neuro-foundation (as it is now known) Gayle was very supportive at this time and confirmed what we already knew that my granddaughter also had NF. she gave us lots of info on NF ( so i learnt a lot from the neuro – foundation leaflets ) went into school and gave a talk to the teacher on the problems children with NF have as they normally get labeled as Naughty and Disruptive . The teacher had never heard of NF and considering there are more people with NF than multiple sclerosis and everyone has heard of that , this just shows that all these years later since my daughter was diagnosed not a lot more is being done to promote awareness.

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