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Neurofibromatosis Midwest

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“Mom found NF Midwest, she calls them our life ring and for good reason, they saved us in more ways than they or anyone else could imagine. We were no longer alone. They sent us information, talked to us gave us a breath when everyone else seemed to have taken it away. Trust me when I say my NF is much easier with them in my corner. ”
-Myshell
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“..we reminded ourselves to not get overwhelmed by the info and just to take it all in stride as much as we can. I think when it’s all new to you, it all sounds so scary. Which is why it was so nice to meet other families with happy kids and adults with NF. ”
-Sue
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“I received both of your packets in the mail yesterday and I wanted to say THANK YOU! The NF packet provided me with so much information I cannot thank you enough. When we got his diagnosis in November we had never even heard of NF so this has all been a bit of a whirlwind for us. Thank you for providing me with the tools to pass along to his teacher and my family! ”
-Jessica
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Fatigue in NF1?

New study shows an increase in perceived fatigue in children and young adults with Neurofibromatosis Type 1.

Article: Study Shows More Fatigue in Neurofibromatosis Type 1

Posted By Diana Haberkamp | On January 15th, 2020

An interesting article was just published in the Journal of Paediatric and Child Health called “Perceived fatigue in children and young adults with neuroﬁbromatosis type 1”.

This was a small study done in the United Kingdom that compared 75 children with neurofibromatosis type 1 to their 16 unaffected siblings to determine if fatigue was more prevalent in children with NF1. The study shows a presence of perceived fatigue in children and young adults with NF1. This is just one study, but it demonstrates that more research is needed to look at fatigue and NF1 and what factors might be contributing to the fatigue.

Note: This does not mean all children with NF demonstrate increased fatigue.

Read the Article

Comments (1)

Martin D Razzano says:

May 16, 2022 at 5:32 pm

I have nf1 I’m 64 years and it bothers me I have a low energy level. I will work in my yard for a few hours and take a break but it’s difficult to get my energy back. I take care of myself and take vitamins every day. I was also diagnosed with prostate cancer and had my prostate removed. It has been 2 years. I still have low energy. I have been seen regularly by my doctor. I need so answers please 😩

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