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Wednesday, October 4, 2017

Neurofibromatosis: Find a Cure #EndNF #NFwalk #JacquieRogers


Neurofibromatosis:
Not for the Faint of Heart
by Jacquie Rogers

This past month Mr R and I drove back to Idaho for the NF Walk put on every year by the Idaho chapter of the Children's Tumor Foundation.   This year, our NF Heroes raised over $15,000 for research to find a cure for this devastating genetic disorder.  More on that later, but for now, a picture. 

Because guess what?  We walked the entire mile.  Okay, so we were the last ones across the finish line, but we made it.

NF Walkers Mercedes, me, and Brew
Besides fundraising with walking, we also had a party of sorts.  The kids had a lot of fun with games, and the adults could buy tickets for raffle baskets.  I also donated a basket, which was part of the silent auction.  Thanks to my sister-in-law for putting the basket together.  I thought it turned out really pretty.

Silent auction basket.
Yes, that really is Chicken Dinner Wine
While we chowed down on pulled pork sandwiches, people milled around and visited.  Plus, we took lots of pictures... just because.  We had a lot of fun and raised money for a good cause.  $300 of that money came from the auction at my readers' event in Silver City last July.  (Be sure to write the dates July 20-22, 2018 on your calendar for next year's readers' event!)

Now that I've told you about our fun, let's talk about NF--what it is.  This is from CTF:
Neurofibromatosis, also known as NF, is a genetic disorder that affects 1 in every 3,000 people. There are three types of NF: NF1, NF2, and schwannomatosis. Neurofibromatosis type 1 (NF1), formerly known as von Recklinghausen NF or Peripheral NF, is the most common of the three types of neurofibromatosis, and is also one of the most common inherited neurological disorders, affecting about 1 in 3,000 people throughout the world. The disorder is characterized by multiple café au lait (light brown) skin spots and neurofibromas (small benign growths) on or under the skin, and/or freckling in the armpits or groin. About 50% of people with NF1 also have learning challenges. Softening and curving of bones, and curvature of the spine (scoliosis) may occur in some patients with NF1. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. While NF tumors are generally not cancerous, they may cause health problems by pressing on nearby body tissue. Sometimes a benign tumor may become malignant (cancerous), but most people with NF1 will never develop a malignant tumor. NF1 is usually diagnosed in childhood.
So what does NF look like?  If you go to the CTF site you won't find very many who actually have bumps, and most sufferers stay hidden.   My daughter Mercedes, however, is an NF Hero.  She never shies away from educating others about NF and its manifestations.



She has tumors all over.  Imagine walking on sharp rocks all day--that's how the tumors on the bottoms of her feet make her feel.  Shoes, bras, or any clothing that binds cause her pain, sometimes unbearable.  Also, she suffers from fibromyalgia-like symptoms, especially joint pain and chronic fatigue.

Yet, she never lets pain slow her down.  She's the sunniest person I ever met and I'm really proud of her.  That's why I featured her personality in Mercy: Bride of Idaho.

Oh, I forgot the shenanigans.  Yes, Wonder Woman photobombed Mercedes.



If you're on Snapchat, friend me!  My handle is jacquierogers.  You can get videos of Sassy's latest updates there.  And goofy pictures of her scribe.

11 comments:

  1. Thank you Mom for all you do to help raise awareness, it is because of support and encouragement that you give me and other people that are very close to me give me that I'm able to be as strong as I am.

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    1. I could never be a strong as you, but you're welcome. :)

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  2. There are so many genetic diseases we hear about now because research has put a spotlight on them. That's good. I think it would be a good thing if children had genetic testing, but the health insurance companies would immediately delete the insured. That's a real shame because the earlier something is caught, the better it is for the patient.

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    1. Very seldom NF, though. More children are born with NF than cystic fibrosis and muscular dystrophy combined. Nearly everyone knows about the latter two. I think it's because of the poster child syndrome. No one wants to show NF. Even in the CTF newsletters and website do they show visible signs of NF very often.

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  3. My husband has NF. He is considered a light case. We did see a geneticist who said that now he is in his 50s that they should be slowing down. It is wonderful that there is a walk for this condition and to make it better known to work toward a cure. Not sure that is the right word, but to maybe test for it earlier.

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    1. Children's Tumor Foundation sponsors walks all over so there might be one in your area. We're desperately hoping for a cure. Both my granddaughters have it as well. Best of luck to you and your husband.

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    2. I'll have to look into that because everything that I've read and been told is that it gets worse with age... At least for us females, because of the hormone fluctuation

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  4. Was unaware of this condition. thank you for sharing such a personal journey. Hope there will be some breakthrough soon.

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  5. Jacquie, I had no idea. I am far more knowledgeable and mindful now. I pray there will be breakthroughs and a cure soon. It's wonderful how you were inspired to use Mercedes in your book. She sounds amazing!

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  6. I so admire Mercedes! She has been so sweet and supportive to me. As you said, she always appears cheerful. I do worry about her and all she has to deal with daily. I wish the best for her.

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