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Libby's Neurofibromatosis Surgery

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Hi, I’m Libby, 44 years old and I have Neurofibromatosis Type 1 (NF1). I was diagnosed at age 5 and have been suffering from complications associated with it from it ever since.  I am 4th generation in my family to inherit NF. 

NF causes tumors to form all over my body both internally and externally wherever there are nerves present. I have thousands of these bumps all over my body. NF causes chronic pain, fatigue, disfigurement, depression,  scoliosis, orthopedic issues, motor delays, discrimination, high blood pressure, cancer, bone deformities, ADHD, loss of balance, dural ectasia, paralysis, complete or partial hearing and vision loss and learning disabilities, neuropathy, and death. Many of these are symptoms that I suffer from on a daily basis. I am on fifteen different prescriptions to help cope. The bumps can definitely be painful, especially if I lay on them the wrong way, bump into a wall, if someone hugs or pats me on the back too hard, or if the shower water hits them a certain way. I also have them on the bottom of my feet so sometimes it can be painful walking. The bumps also cause regular itching, and creams don’t seem to help. I am in constant pain and I believe that a lot of it has to do with the tumors ('bumps') all over me both inside and out. Neurofibromatosis is not a "rare skin disease", it is a "neurological disorder".

NF affects approximately every 1 in 2,500 individuals with no regard to race or gender and anyone can be born with it. According to the Children's Tumor Foundation, NF is more common than cystic fibrosis, Duchenne muscular dystrophy, and Huntington's Disease. There is no cure for NF at this time. Studies are being done to help one day, hopefully, find a cure for NF. NF is not contagious but it is genetic. There are also NF cases that are a "spontaneous mutation". Meaning basically first in the Family. Each birth of a child that has a parent affected by NF has a 50/50% chance of passing it on. Luckily, I did not pass it onto my only child. For this, I am very thankful because living with NF has been very difficult. 

As a child, I was bullied by other classmates nearly every day because I looked different than everyone else. I felt very socially isolated. As an adult, I am still faced with discrimination and still looked at funny when I do go out in public. The last time that I can remember “comfortably” wearing a bathing suit was when I was 16 years old. During the summer months, I am always covered up in long sleeves & pants or cargo shorts because of the looks that I get from people out in public. I just want to feel normal and not get stared at all of the time because I look different than everyone else.  I am often socially isolated and I feel rejected by my peers.  I haven’t dated for many years. I know that this is because of my looks and it makes me so very sad. Not to mention the constant pain that I am in daily.

I’ve created my GoFundMe page in hopes of raising awareness for NF and money for a special procedure that is only offered by just a few doctors in the United States. The procedure is called “Electrodessication” and it goes beneath the nerve to remove the tumors. Hundreds to thousands of the “bumps” covering my body would be removed in just a few sessions.  Ideally, relieving much of my pain physically and emotionally. This procedure will take more than just one sitting. I will need multiple ED surgeries to remove all of my tumors.

This type of surgery isn’t like the surgeries that I have had in my home town , which only remove the bumps on my skin. Because the bumps are taken off only at the surface, they either come back or have a high probability to come back at any time. Unlike traditional surgeries that only “cut out” the bumps on my skin, Electrodessication can go beneath the nerve to remove the tumor. It has been very successful with others who have had the procedure performed. The "bumps" don't come back. like the ones that I have had just 'cut out'. My belief is that having Electrodessication may help with my chronic pain and orthopedic issues. I firmly believe that it will help tremendously with my depression.

If you have the heart and understanding to make my biggest dream come true, I would be most appreciative. NF causes me pain and extreme sadness  because of the bumps all over my body. I’m worried about my future. My entire life I have never felt pretty and I am confident that this will make me feel a million times better about myself and not in so much constant pain. The results from others that have had this procedure performed have been extremely satisfied after having Electrodessication.

I promise to keep you updated with my healing progress as well as keep you informed about any more upcoming Electrodessication surgeries that I may have planned for the future.

* If you also have NF and would like to raise awareness with me and you have a Facebook account, just leave me a comment on this page or message me on Facebook. *

Thank you kindly,

Raising Awareness for NF on The Doctors 11/22/16 


NF definition National Institute of Health 



Libby Huffer
Fort Wayne, IN

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