Cure For Neurofibromatosis?

October 30, 2016

With the joys of art and common topics with my visitors, I want to touch on something that I have and can't get rid off. It's something that can't be cured. But it can be treated to minimize the effects. I was born on May 1989. To be clear I don't remember nothing as a baby but I remember my childhood quite well so I am going to start from age four. I was diagnosed with an condition called Neurofibromatosis or simply NF.  Probably nobody heard of it because it's rare 1 in 3000. Fitsrt of all I'm not a neurologist so I won't use any medical definitions and this entry is only my opinion  But I can tell you how I cope with it. At any disability or medical condition I rate it severe to very minor. 

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Neurofibromatosis has two types (type 1 and type 2), I have NF1. It causes tumors to grow on the nerves. I am going to focus my attention on my condition this particular one. Before you answer and make assumptions, I'll tell you what you did not know. Like I said I'm not a doctor, so please understand… I will tell you what I know from my experience.

What's Neurofibromatosis? It is a neurological condition. How do person gets it? A mutation in your bodies. You can be diagnosed at birth or later in life. Is ¬†it contagious? No, person who has NF, their child might have it. It's 50-50% chance. In simple term if your grandparents had history of cancer or obesity future generations will inherits the condition. How does it effect a person? Various ways. I would say my condition is minor but it still caused uncomfortable problems. Like tumors that sometimes can't be removed. What are the side effects? I can't say for sure. But it can cause development of new tumors, deafness, blindness, ADHD, troubles learning, sometimes slurred peech, facial deformities, bone deformities, visible ¬†(pale or brown) birthmarks and sometimes cancer. I just got massive headaches and nausea.¬† Luckily, my vision is perfect and I did not wore glasses at all and hearing is very good. But I won't say how strong I am but I get tired quicker. But no matter what, I participated in few sports. And still went to school even though I fet horrible. Is there a cure for NF? If there was I wouldn't be writing this article. The answer for now is no. You can treat it with surgery, chemotherapy or radiation therapy. I had surgery and later chemo afterwards. Can new tumors grow? It can be stable but In some cases they can, and even in greater numbers. They are like weeds in your flower bed. I had a tumor on my skull that was removed when I was just four, but for all my life I have a tumor on my brain stem. This tumor was removed at 16 by a very skilled neurosurgeon in one of the best hospitals in the world. Before the tumor was removed from my brain stem, I had to have a feeding tube put in. A teenager who is almost 5‚Äô¬†8‚ÄĚ(174CM) shouln't ¬†be super skinny and I was and loosing a lot of¬†weight. I still have the feeding tube in me‚Ķ I still can swallow but I have hard time eating solids. Light foods are alright. ¬†How big the tumors can get? If Neurofibromatosis pacient has tumors they can be very tiny or¬†gargantuan. My was about the size of a tennis ball. Tumors are not shaped exactly¬†round and that's why are difficulut to remove. In an totoally unrelated condition the tumors can be bigger than avarage size watermellon.

For very long time I was thinking, how to cure Neurofibromatosis or stop the new mutations. When I seen cancer patients going through treatments. And I thought since cancer sufferers can be cured, soft of, so why not NF patients. So here is my idea and potential cure. Cancer patient who have leukemia for example usually undergo bone marrow surgery. But let me use lame men's terminology.  I am crazy on computer technology and let's say you want to replace old ram chips, you open the tower case and replace old with new ones that correspond with your model. With a human body is very unique and incredibly different. Everyone of  us have a DNA chain. This special chain tells your characteristics from color, gender, height and so forth.  So I was thinking, since a baby in a mothe's womb can (or could) be genetecly customized, why not a live person.  And I am not talking about fake muscle or breast implants. 

Neurofibromatosis patients have a missing chromosome or link. And since Neurofibromatosis is spontaneous condition and if I decide to have a child, my child could have it or it could skip the generation, so possibly my grandkids could inherit my condition. 

My thoughts and ideas of a potencial cure is simply through a blood test.  Go through the entire family genealogy to see who had it first. And with a blood donation and human cells from the family member or anyone who doesn't have the illness could fill that missing link,. Or some whow combine these chains through stem cells.  

I am for genetic engineering… and comprises have to be made. For example, if you do not want a baby, but your partner does agreements can be made. Genetic engineering while is good thing it is expensive and risky. For example if you decide to finally have test tube baby, even though the condition from your ancestors might be gone, something can always go wrong and a baby will have something else or a new illness will be created. I honestly hope there is a cure for any conditions some day. If it possible? Maybe through stemcells replacement… I don't know. Maybe there is already a cure already, but I dont know nothing about it.

Going back to my surgical treatment, tumors grow in unusual places. Some of the tumors can't be reached because they gro an vital part of the body. And I still have some left. Years ago surgeons had to cut you open to phisicly remove the tumors away. But with new advanced technology doctors just make a small incision and with a laser camera, tumors are zapped away.  Or there should be a pill that shrinks your tumors that can't be reached at all and keeps new ones from forming. You must be thinking to yourself, if there is a tablet to cure cancer…? There might be but for now specific types of cancer can be treated 100%. I believe that in couple of years we would not have to schedule life saving operations and be filet on the table. With none word nano technology.  

To sum it up, I don't want to scare any one but, that's life. I am normal just like any other person. To be honest I don't want to show my pictures from my hospital visits because thay are too painful to watch (maybe someday when I have a stomach to look at them).  In my case and many others surgery is the only way to go. 

I never said this to anyone easpecially my closest school friends because they might not understand how this is impacting my personal life or they might ask me questions which I couldn't answer in the past. 

With my different options and a potential idea for a cure, what is the best solution? Honestly nobody wants to suffer and I do not know… if it was easy, like with computer components I should be getting high-fives. And I totally and personaly hate when others use a term disease or illness. Just stick with genetic condition.

© E. P. Sendecki / EeroSendTheKey