MANCHESTER Metropolitan University is to stage the first event of its kind in the UK to share knowledge and support about Neurofibromatosis.
The one day event, on 15 February at MMU’s Research Institute for Health and Social Change, will hear from key researchers and geneticists along with talks from people with the condition.
There are two forms of the genetic condition. NF1 causes flat brown birth marks or ‘café au lait’ spots on the skin, freckles in unusual places, neurofibromas (lumps and bumps) on the skin and mild learning difficulties.
In NF2 people develop nervous system tumours typically in the brain and spine and this can cause hearing loss, deafness, and mobility problems.
Improving lives
MMU’s Dr Carly Jim, lead organiser of the event and a mother of a young daughter with NF1, said: “Even just 30 years ago, NF was considered to be a medical curiosity and although we know more about it now there is still a lot of stigma and inaccurate information out there.
“It remains something of a mystery to many medical, social and educational professionals who may have never heard of the condition or supported someone with it before.
“It is only by bringing medical experts and those with the condition together that we can improve the lives and treatment of those living with the complexities of NF.”
The free one-day event will be presented in two halves, with tickets available for each or all day.
Experts and geneticists
The morning session will be medically and research orientated with speakers such as MMU’s Dr Carly Jim and geneticists Dr Sue Huson and Professor Gareth Evans from Manchester’s Saint Mary’s Hospital.
Either side of lunch will be talks from the UK charities The Neuro Foundation, Children with Tumours and Changing Faces. The afternoon session will offer the chance for those living with the condition to share their experiences. Adam Pearson, who has NF1 and appeared in Channel 4’s Beauty and the Beast series, will also speak at the event.
The free event is organised by Well-being Research Group, made up of researchers from Manchester Metropolitan University and open to anyone over the age of 16 with an interest in Neurofibromatosis.
It is particularly suitable for GPs, community paediatricians, health visitors, nurses, teachers and all allied health professions. People with the condition are also invited to attend.
More awareness needed
Dr Jim said: “We can’t change the medical diagnosis for people, but by sharing experiences we can identify things that matter to people with NF and push to change those.
“Those with the NF repeatedly tell me they want more awareness of their condition, both amongst medical professionals and the general public, I believe this is possible and this knowledge exchange event hosted by MMU it a massive step in the right direction".
It is essential to register for a morning, afternoon or full day place at the event.
For more information and to book please visit the event page http://nfwellbeing.eventbrite.co.uk/
What is Neurofibromatosis?
- NF is one of the most common neurological conditions caused by a single gene mutation (a "spelling mistake" in the genetic code)
- NF occurs in all ethnic backgrounds, in both sexes, throughout the world
- A parent with NF has a 50% risk (or 1 in 2 chance) of passing NF on to their child.
- However 50% of new diagnoses occur without any other member of the family having NF.
- NF1 is a common genetic condition and occurs in 1 in 3000 of the population.
- The early signs of NF1 are café au lait spots (flat brown birthmarks) on the skin, freckles in unusual places, and neurofibromas (lumps and bumps) on the skin.
- One third of people will have one or more medical complication during their lifetime.
- Mild learning difficulties are common in NF1
- NF2 is rare genetic condition and occurs in 1 in 35000 of the population.
- In NF2 people develop nervous system tumours (lumps) typically in the brain and spine
- NF2 can cause hearing loss, deafness, and mobility problems
- NF2 is usually diagnosed by MRI scans
- NF1 cannot turn into NF2, and NF2 cannot turn into NF1.
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