MY LIFE WITH NF

This may well be one of the most personal interviews I’ll ever do. 1. because it’s my youngest sister. 2. because it’s sometimes heart gripping when someone so close is in basically, never ending pain. But that’s not what I want you to get out of this story. This is about someone living with a condition that most of us could never imagine, living with it and beyond it. And for that reason I’m proud of her. You may have heard me say ‘Life is Good’ a million times, this lady proves my point.

Mother, Grandmother, Sister, NF Advocate, Lover of Life... Melanie has NF, or Neurofibromatosis. NF is a disorder that causes tumors to grow along the nerves. There are two levels of NF. Melanie has NF1. It’s very painful and it’s a lifelong condition. I remember the first time I really knew what it was about when Melanie had serious trauma after giving birth to my nephew. It was shocking to see someone so young and vivacious go through such a trauma. But, never has that stopped her from enjoying her life and her children. She travels, lives life to the fullest and stays more positive than many without such pain. Melanie remains so positive that I don't remember seeing her without a smile. Here is her story.

Melanie, how long have you had NF1?

I was first diagnosed at 18 when I found a large lump on my scalp. I had it surgically removed and after the pathology came back the Dr. told me I had Neurofibromatosis 1 but nothing more explained.

There is so much more information given to patients now. I was never told that NF is a genetic condition with a 50% chance of passing on to my children until I was already pregnant with my 3rd and last child. I'm what they call a spontaneous mutation. No one else in my family of 7 children has NF. There isn’t a cure for NF but lots of research is being done.

I have lots of tumors internally. Because they grow on nerves it is very painful. I also have severe itching. I have several cafe au lait spots all over my body.

What inspires you to be strong and carry on?

Other people that I have met that are severely disfigured from NF. My friends Matthew and Michael who both passed away from NF but lived full productive and positive lives in spite of their condition. I always try to look on the bright side and have the realization that it could be so much worse for me. I think most people consider NF to be a condition.

How does having NF affect your daily life?

I have several medical issues that were caused by surgery to remove tumors. I have shortness of breath, weakness in my right arm and the constant pain. A lot of people with NF have obvious signs such as tumors on the face and disfigurement and deal with the constant stares etc. My tumors are all internal.

How many surgeries have you had over the years?

I have had at least 20 surgeries on different areas to remove tumors from almost every part of my body. I was paralyzed from the waist down for over a year due to a spinal tumor, my arm has been paralyzed twice from surgery to remove a tumor. I've also had several very large tumors, one in the stomach and also the chest.

What are some of the limitations?

Because of the lung problems that I have.. I'm not as active as I used to be. I have tumors on the spinal cord which makes it painful to sit or stand for long periods of time.

There are ways to be healthier. It is very important to have regular check-ups with a neurologist, to have fast growing tumors evaluated because of the potential to turn cancerous. If the tumors are internal you will have to have regular MRIs. I also try to eat as healthy as possible.

What advice/inspiration can you give to others who live with NF?

Whether it's NF or any other condition that’s incurable, it is what it is. And all that you can do is to take the best care of yourself possible and to live your life to the fullest. It sucks to have any condition or health problem but we are alive and there is always hope for a cure, if not for us, for others that suffer from Neurofibromatosis.

 

Melanie gave me this interview 2 days ago. Today she went in for her 21st surgery. She’s out of surgery now and doing well. After some healing Melanie will be ready to get back to the business of enjoying her journey, Harley riding, seeing the world and being Divalicious! 
Life is Good!

You can find more information on Neurofibromatosis on CTF.org, http://www.nfinc.org and http://kidshealth.org/parent/system/ill/nf.html