Last year, I posted an amazing story about a friend of mine and her journey with NF (Neurofibromatosis). NF is defined by tumors, called neurofibromas, that grow along nerves in the body or on or under the skin. As the tumors increase in size, they can press on vital areas of the body, causing problems in the way the body functions. This puzzling disease has no cure. Day in and day out this Mom watches her son struggling with pain, difficulties and being different. This mom is not one to stand by and watch. She has made it her mission to educate and help find a cure for this dreadful disease.
Did you know…
1) 1 in 3000 babies are born with NF
2) 50% of NF cases are caused by a spontaneous mutation – it can happen to anyone.
3) NF causes tumors to grow along the central nervous system, brain, skin (cafe au lait spots), and along nerve endings.
4) Can cause learning disabilities
5) Can cause weak muscle tone – affecting mobility, breathing, as well as vision.
6) Can cause deafness
7) The tumors on the nerves are painful, most often cannot be operated on, and result in chemotherapy for treatment
8) There are three types of NF :
NF1 is the most common type. It is diagnosed by physical changes in skin appearances, tumors or bone abnormalities. It is usually evident at birth or by the time they child is 10 years old.
NF2 is less common and characterized by slow growing tumors on the 8th cranial nerve. This pressure damages the retina causing vision problems.
Shwannomatosis is a development of multiple schwannomas (special cell tumors) everywhere EXCEPT the 8th cranial never. It is characterized by pain, numbness and tingling in fingers and toes.
9) NF is a progressive disorder which generally kicks off at puberty, when the hormones are changing and again for women during pregnancy
10) There is no Cure!!!!!
Help find a cure for this puzzling disease!
Join us for the 2nd Annual NF Charity Sale!
This year at the sale we are also having 4 tables hosted by SCENTSY, THIRTY-ONE, SOUTH HILL DESIGNS and JAMBERRY (where a % of the sales will go directly to NF research).a 50/50 draw, and an amazing raffle with prizes from Cat World, Bowmanville zoo, Joey’s World and much more….