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Neurofibromatosis Awarness Month

Katie May 15, 2013

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By Katie, Contributing Writer

May is Neurofibromatosis Awareness Month. Neurofibromatosis (NF) is a genetic disorder of the nervous system. It causes tumors to form on nerves anywhere on the body at any time.  It also affects the development of non-nervous tissues such as the bones and skin. The disorder that effects millions of people worldwide. It effects all races, ethnic groups and both sexes equally. It is one of the most common genetic disorders in the United Sates, effecting  more than 100, 000 of the population.

Neurofibromatosis is an autosomal dominant genetic condition, it is not contagious. Approximately 50% of people with NF have a prior family history with it. The other 50% of a result of spontaneous genetic mutation.

There are three types of Neurofibromatosis:

Neurofibromatosis 1 (NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, it is characterized by multiple cafe-aulait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF1 also have learning disabilities.(Taken from Children’s Tumor Foundation)

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Photo Credit:NF Network

Neurofibromatosis 2 (NF2): also known as Bilateral Acoustic NF (BAN), is much rarer and occurs in 1:25,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom.(Taken from Children’s Tumor Foundation)

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Photo Credit: NF Network

Schwannomatosis: a rare form of NF that has only recently been recognized and appears to affect around 1:40,000 individuals. It is less well understood than NF1 and NF2, and its features may vary greatly between patients. 

Unlike NF1 and NF2, the inheritance patterns of schwannomatosis are not understood due largely to lack of cases to study. However, it is estimated that 85% of cases are in fact sporadic (no previous family history) and 15% are inherited.(Taken from Children’s Tumor Foundation)

Diet And Neurofibromatosis 1

Connections between diet and neurofibromatosis is a gray area. Most doctors and people in general will tell you that diet has no effect whatsoever on NF. I tend to think that to an extent it does.

When you look at NF1 as a whole, not just the tumors and cafe-latte spots,  diet and nutrition may come in to play quite significantly. There are ways to improve learning disabilities, pain management, itchiness and outlook on life through good health. As for slowing the growth of tumors there is some research on the benefits of propoliss and more specifically Bio30 and Bio 100.

Some woman with NF have mentioned their hormones effecting tumor growth, aka pregnancy, puberty and menopause. It may be possible that adding less hormones to our bodies could slow the possible growth of tumors. Cutting out or limiting things like processed soy, plastic containers for food and birth control are a few ways to limit the amount of estrogen we are putting in our bodies.

Until the past 100 years or so processed foods, air pollution, radiation, toxic chemicals and preservatives were almost unheard of. The number of people effected with things like cancer, autism, ADD, ADHD, acne has resin multiple times over. Though yes, I do acknowledge that with NF the problem is our genes mutating. My family has been effected by NF1 since at least the late 1890s. My great grandmother died at 96 with almost perfect health compared to later generations effected by NF such as my grandfather, great All charter school closings or delayed opening are called into local radio and TV stations, and available from Sover. uncles, uncles and cousins. I know for a fact that diet and quality of life has effected them.

For optimal health and quality of life diet is absolutely essential. A diet full of organic, non processed foods as well as properly preparing those foods, healthy fats, low sugar, making sure you are eating nutrient dense foods full of vitamins such as K, D, greatly affect your over all health regardless of if you have NF or not.

What NF Means For Me

My family has been affected by NF 1 for at least 4 generations.

My Complications From NF 1

Multiple cafe-au-lait spots
Freckling
Multiple neurofibromas (tumors)
Over sized head
Slight curvature of the mobile casino spine
Learning disabilities

I have determined not to let NF defeat me or define me. NF is not who I am. I am a child of God created in his image. 

There are times when I let the ugly head of insecurity arise. Even in researching for this article I was reminded of how blessed I am right now. Currently my own case of neurofibromatosis is fairly mild. I have had two surgeries to remove benign tumors from my leg and breast over the past 8 years. My mom and brother have had some surgeries to remove tumors as well.When it comes to complications from NF that is nothing! There are others I have read about who suffer from brain tumors, face deformities, scoliosis or even death. My mom has a tumor on her elbow that is inoperable. There are so many nerves wrapped around her tumor that if they were to remove it she could lose the use of her arm.

Believe me I don”t have it together all the time, I was scared out of my mind before I had my lumpectomy. Telling a young woman who wants to have and nurse children someday that you are removing part of her breast is no walk in the park. There is a 10% chance that a neurofibroma can become cancerous. That 10% chance can mess with your mind if you let it. Thankfully my tumor was not cancerous just like my doctor assumed.

What NF Means For You

For those who are unfamiliar with neurofibromatosis you can research, support and raise awareness.

There are two site that I have found to be so valuable in learning more about NF

Neurofibromatosis Network
Children’s Tumor Foundation

If you or someone you are close to has NF then I strongly urge you to find a supportive community to be a part of.

Neurofibromatosis Network has a list of Support Groups throughout the US.

Inspire is a online supportive community forum where you can read, ask and answer questions. It is open to anyone world wide.

If you have not already, it is important to periodically checked by a neurologist that understands neurofibromatosis. Very little time is spent teaching out this disorder in medical school. Finding a doctor who understands what is going on with your body is important. The Neurofibromatosis Network has listing for doctors
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Photo Credit: Neurofibormatosis-Reggie Bibs

Remember that you are not alone. Many times we can only focus on the negative aspects. Don”t be afraid to embrace the life God has given you. You never know how he may use you and your testimony of suffering to encourage and help someone else.

You are fearfully and wonderfully made! 

Neurofibromatosis is not who you are! You were creative to thrive and live life to the fullest for the glory of God!

For the Lord does not see as man sees;[a] for man looks at the outward appearance, but the Lord looks at the heart.” 1 Samuel 16:7b

Do you know anyone that has NF?

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Katie
Katie is a dorm “mama” to 16 amazing girls ages 5 to 18 at a home and school for the Deaf in Baja California, Mexico. She is happiest in the kitchen creating nourishing meals and home remedies or outside with at least one of her girls at her side. She grew up using herbal supplements but didn’t discover the joy of making her own until 2008. Katie is passionate about real food, herbs and simple living. You can find her blogging about all these things and more on her blog, Mexican Wildflower where she is living simply by God’s grace.MexicanWildflower
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3 Comments

  1. […] family has been personal efffeted by NF for at least 4 generations. Please join me at Modern Alternative Health to learn […]

    Reply

  2. Hi my name is Donna and I have Schwannomatosis of my spine bracial plexus and lung I’ve been fighting so hard surgery after surgery I also had radiation being miss diagnosed I hope all that have this painful diease never let any doctors tell you your wrong when you tell them you have a new tumor because we know stay strong they have made me somebody that I don’t want to be and that is a fighter in more ways than one which is wrong I feel there is zero support but yet mass general hospital of Boston have received about twelve of my tumors but never ever have avicaited for me god bless

    Reply

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I’m Kate, mama to 5 and wife to Ben.  I love meeting new people and hearing their stories.  I’m also a big fan of “fancy” drinks (anything but plain water counts as ‘fancy’ in my world!) and I can’t stop myself from DIY-ing everything.  I sure hope you’ll stick around so I can get to know you better!

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