More Funding And Awareness For Neurofibromatosis

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  • Neurofibromatosis is a rare genetic condition.
  • There are 3 different types of NF, which include:

                                      Type 1, Type 2 & Schwannomatosis 

 

NF1 is a common genetic condition, with approximately 1 in every 2,500 people are born with NF1.

NF2 being slightly less common with 1 in 35,000 people are born with it, and even fewer are diagnosed with Schwannomatosis, the third main type of NF.

NF can cause symptons like café-au-lait patches (coffee coloured skin marks), Neurofibromas (small benign pea-sized growths or lumps), Plexiforms - large growth/tumours on or around the nerves. 

NF can also cause Scoliosis (mild to severe), learning disabilities, with links to AHDH, Autism, and sometimes trouble learning specific things - EG English, Maths etc. 

Some tumors which grow to be a dangerous size, need to be removed, which can be dangerous within itself. Complications can be likely, and they can even sometimes grow back.

Disfigurement can also be the case, depending the the size and location of the lumps.

In rare cases, some tumours can turn cancerous. 

Neurofibromatosis is considered a ticking time bomb. At anytime, a tumour can grow, anywhere, any size, and any place on the body.  

Little knowlage is known about this disease & little funding is going into it. 

We believe that NF should be known and distinguishable to every GP & Schools, and nurses, to help not only diagnose NF, but also help and understand the needs of those children with it.

We also hope that more funding will be put into researching this disease into ways of preventing future generations of inheriting the disease, find new and better medications, and even find a cure.

 

Visit our blog for more information: http://thrivingthroughlifee.wixsite.com/thrivingthroughlife

 

- Katie and Charlotte 



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