May is NF Awareness Month (plus my NF Story)

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This shop has been compensated by Collective Bias, Inc. and its advertiser. All opinions are mine alone. #IKnowAFighter #CollectiveBias. Compensation from the post will be donated to raise NF Awareness.
May is NF Awareness Month #IKnowaFighter #ad
A few months ago, a question was asked in the private Social Fabric community if anyone had Neurofibromatosis (NF). I think I responded in about 30 seconds. Despite that NF is more common than Cystic Fibrosis, I never hear anyone talking about it, let alone knowing what it is. I have NF-1.

I have NF-1 #IKnowAFighter #ad

You probably don’t know what NF is, am I right? Ok, first off, don’t Google yet. I don’t want you to freak out. Because chances are you will. So just do me a favor… Please. Just keep reading.

I’m going to be honest, writing this post was harder than I thought it would be, and I’ve probably started it a dozen times. It’s strange to write openly about a disorder I have that not many people know about, or know that I have.

In a nutshell, “Neurofibromatosis encompasses a set of distinct genetic disorders that causes tumors to grow along various types of nerves. NF can also affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body.” (The Children’s Tumor foundation website says it much better than I do) NF affects one in 3,000 people of all populations; there is no effective treatment or cure.

Sometimes disabilities/disorders are invisible, and with my NF, you might not know I have it, unless you know what to look for. I have NF because of a genetic mutation on chromosome 17, and many of the members of the family on my mom’s side have NF, although I am the only one who has been formally diagnosed.

I have nearly all of the traits of NF-1 – cafe au lait spots, lisch nodules, neurofibromas, skeletal abnormalities, freckling in my armpits and groin, and then of course the family history. NF-1 is related to my learning disabilities, scoliosis, bone defects (in particular, my right arm) and hypertension. On top of all that, I had an influx of NF symptoms while pregnant.

Since NF-1 is genetic, there is a 50% chance with each pregnancy for the child to receive the NF-1 gene. Two of my three children have probably NF-1. Sebby and Quincy seem to have very similar symptoms of NF as I do. Right now, my youngest, Edison. doesn’t show very many manifestations of it.

NF-1 has so many variations within the disorder, the severity and manifestations can vary greatly, even among family members. My symptoms or my children’s symptoms could change tomorrow, in a week, or remain the same. We have no way of knowing the when or if and that’s why research is so important.

May is NF Awareness Month and the time to create awareness, educate and understand NF, and all the ways you can help, whether it’s participating in a NF event, volunteering or simply educating yourself on how to make a difference for people whose lives are affected by this genetic disorder. The “I Know a Fighter” campaign is an opportunity to recognize the many ways the community pushes back against neurofibromatosis.

NF Walk #IKnowaFighter #ad

NF Walk – Washington State – May 2008

Get social and involved by following The Children’s Tumor Foundation
http://www.facebook.com/childrenstumor
https://twitter.com/childrenstumor
https://instagram.com/childrenstumor

Later this month, my family and I will be flying to New York City to the Children’s Tumor Foundation offices to join the fight against NF.

How will you join me in the fight against NF?

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About Kerri Jablonski

Kerri Jablonski AKA The Maven lives in Seattle,WA with her 3 kids (2008, 2010, 2013), husband, cat and backyard chickens. Two of her children have special needs. Kerri enjoys cooking, travel, movies and spending time with her family.

Comments

  1. I’m so proud of you for opening up and sharing. I had never even heard about NF until meeting you Kerri and for several years would have had no idea you had it. It’s invisible illnesses like these that need the most awareness and education, so I’m so glad to see this campaign and that you’re a big part of it! xo

  2. jen temcio says:

    I appreciate you explaining NF from your point of view and educating me on this disorder. Before this I had never even heard of NF and I hope that this campaign will change the limited awareness. Thank you for sharing your story. #client

  3. I am so happy to read your story. Thank you for your honesty and openness – people like you who open up and talk about these “invisible” illnesses are the ones that will help with research and cures! Thank you for the information and I cannot wait to hear about your adventure in NYC! :O)

  4. A big thank you for opening your heart and sharing your story. I had never heard of this, so this campaign is already working. I hope the NY trip is a great success.

  5. Just in a short space of time I learned so much about NF which I has given me a better understanding of the disease and the importance of research. It has also reminded me of my personal blessings. My awareness has been lifted and I will begin to follow.

  6. Miranda Studley says:

    This post really hit home for me! Thank you so much for sharing. My 3 year old son Owen started getting spots last year. We never thought anything about it, maybe he was spending too much time in the sun? Then we started noticing that he wasn’t talking as much as he should. He was missing some of his developmental milestones. Then we were told he might have NF. It was comforting to put a name on what my son might have, and then I googled it (bad idea!!!). We have taking him to a neurologist, but he wasn’t much help they said that his MRI showed signs of NF. Then we took him to Children’s hospital in Omaha (they are wonderful!) they re-examined the ex rays and determined that their were no signs of NF in my 3 year olds head. As of now he has 3 indicators of NF (speech delay, developmentally delayed, and cafe au lait spots). If you walked up to Owen on the street you would never know that there is something wrong we just have to take one day at a time and continue to get his ears, eyes checked and go to the genetisist every year to make sure he doesn’t exhibit any new systems.

    • Thank you for sharing about your son Owen!

      I’m glad that his case is mild right now, that has got to be a relief. Just take each day at a time, I’m sure he’s a great kid!

  7. Jennifer quesenberry says:

    Thank you so much for sharing! My 14 yo daughter has NF1. Here is a little video about her NF story ( I did this for a fundraiser for the NF association at Childrens Hospital of Philadelphia).
    https://www.youtube.com/watch?v=ssbIi9VRyek

    Even though there is a lot fo uncertainty about Jennas future, I am so hopeful! God bless!!
    Jennifer Quesenberry

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