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!

Court



Resources Used:
http://www.ctf.org/Learn-About-NF/Facts-Statistics.html
http://www.nfnetwork.org/be-an-nf-activist/what-is-advocacy/nf-fact-sheet
http://www.ctf.org.au/living-with-nf/what-is-nf/nf-facts-and-stats/
http://www.nfauk.org/assets/downloads/Neurofibromatosis_Type_1_-_a_guide_for_adults_and_families_v1.pdf
http://www.ninds.nih.gov/disorders/neurofibromatosis/detail_neurofibromatosis.htm
http://www.encyclopedia.com/topic/Neurofibromatosis.aspx



Monday, May 4, 2015

3 Steps to Creating the Life of Your Dreams

Hello friends! Happy NF Awareness month! I decided to kick start this month with a beautiful post written by one of my dear friends Lauren McMurray! I won't give anything away, so make sure to read her blog post and connect with her in the links she has provided for you all! Show Lauren your love and comment and share the heck out of this post!!




3 Steps to Creating the Life of Your Dreams

Whatever you’re doing right now, stop, slow down and just be. Take a deep breath, suck every last bit of air into your lungs, hold it there, just one second longer…and release. Now, how do you feel? Be honest, there’s no right or wrong answer. Just sense whatever comes to the surface and before we get any deeper into what I’m about to share with you, I have one request: be open. If you apply what I’m about to tell you, you can potentially change your life forever. I know I have, so at the very least open your mind to the possibility and let’s begin to unravel the secrets to achieving the life of your dreams.

Step 1: Start with your vision
What do you want most in life? This is a loaded question, I get that, but it is amongst the most important questions that you can answer. If you have a hard time thinking about what you want with the upcoming week, let alone life in general, try taking yourself back a couple of years to the days when you were young and imaginative, when dreaming was encouraged and nothing was out of reach. The goal is to discover your burning desire and have a crystal clear vision of what your ideal life looks like. What does it taste like, feel like, where are you, who are you with, why is this so important to you? See, crystal clear.  

Step 2: Set your intention
Call it what you want - the universe, karma, God, spirit – naming this unexplainable power is not important. What is important is recognizing its existence and understanding that in order to achieve your vision you have to let you intention be known in more ways than one. Write it down, read it first thing in the morning and right before bed, plaster neon sticky notes all over your house, carry it in your pocket, scream it from the rooftops. I’m not kidding! Your intention is going to be the key to attracting what you desire most. Like attracts like, so focus on what you desire, not what you fear.

Step 3: Take massive action
Good things come to those who work and nothing of any worth is going to come easy. Rather than spending days, months and even years getting ready to get ready, start moving now. Short term sacrifice can yield long term benefit, so take action, meditate, journal, exercise and strengthen your toolbox. Grow your mind, body and spirit and never give up. Most importantly, remember, the only way to fail is to quit. 

Don’t quit your daydream. Build it.

With love,

L.

Let’s connect: