Sunday, May 17, 2015

31 Neurofibromatosis Awareness Facts!

May has to be one of my favourite months of the year.... want to know why?! It's NF Awareness month! We should always be spreading awareness and educating others on NF, but is just seems so darn official when it has a title!

In this post I will outline 31 facts about NF, one for each day of the month! So lets get this post to go viral and make sure that we do our jobs and make people aware of this disorder!

1. Neurofibromatosis is classified into 3 different types: NF-1, NF-2, and Schwannomatosis

2. NF-1 affects 1 in 3,000 people worldwide

3. NF-2 affects 1 in 25,000 people worldwide

4. Schwannomatosis affects 1 in 40,000 people worldwide

5. NF is a genetic disorder and is due to a mutation in chromosome 17, which is responsible for making a protein called "neurofibromin". Neurofibromin plays a role in tumor growth inhibition, which is why people with NF have tumors grow all throughout their bodies

6. Although NF is genetic, 50% of cases are due to a "spontaneous mutation" of chromosome 17

7. NF is autosomal dominant, which means that people with NF have a 50% chance of passing it on to their children

8. NF is more common than cystic fibrosis. muscular dystrophy and Huntington's.... COMBINED

9. NF occurs equally in males and females and is seen in every race and ethnicity worldwide

10. Cafe-au-lait spots are the most common sign of NF (people with NF need to have at least 6)

                                                               ** Cafe-au-lait spots**

11. Learning disabilities occur in 60% of people living with NF

12. 14-40% of people with NF have optic gliomas (tumors of the optic nerves)

13. Many people with NF have chronic pain due to tumor growth on nerves

14. NF can cause complications in all systems of the body

15. Skeletal abnormalities occur in 10-33% of people living with NF

16. There is a less than 5% chance that an NF tumor will ever become cancerous, however many people with NF receive chemotherapy and/or radiation to help shrink their tumors

17. 1 in 3 people with NF have plexiform neurofibromas

                                                       ** Plexiform Neurofibroma**

18. Many people with NF experience an intense itching sensation to their skin. Doctors are not sure why this happens but a simple antihistamine cream should help relieve the itch

19. It is common for tumors to grow on the iris of the eye (Lisch Nodules) but they do NOT affect a persons vision

20. Most children tend to show symptoms of NF-1  by the time they are 10 years old

21. Most people tend to show symptoms of NF-2 by their late teens, early 20's

22. People with Schwannomatosis show symptoms around 40 years of age

23. High blood pressure, seizures, hormonal imbalances and growth problems occur in about 1% of people with NF

24. One of the distinguishing features of NF-2 are bilateral acoustic neuromas (tumors on both acoustic nerves in the brain) which can cause deafness

25. NF-1 is the most common single gene disorder to affect the human nervous system

26. No two cases of NF are alike... NF affects everyone differently!

27. Visual disturbances can occur in 20% of people with NF because of tumor growth in the brain

28. NF-1 makes up 90% of all NF cases

29. NF is NOT the Elephant Man Disease. It is actually hypothesized that the "Elephant Man" had a disorder called Proteus Syndrome, which causes there to be an overgrowth of tissues

30. NF can also be called von Recklinghausen Disease

31. Currently there is no cure for NF other than symptom relief (ex: tumor removal surgery) but as long as we continue to raise awareness, fundraise and do research, I am confident we will come up with a cure at some point in time!

Thanks for taking the time to read this and learn more about NF! I would also like to add that today (May 17th) is NATIONAL NF AWARENESS DAY! So PLEASE PLEASE PLEASE share, comment and like this post, and hey... maybe even go raise some awareness yourselves!


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  1. As you've told me before the public knows nest to nothing about NF. Every bit of information helps.

  2. Excellent info in here!! Thanks for educating everyone!!

  3. awesome I keep sharing this to educate my network of friends