NF Fighters

Miriam’s Story

Hello everyone my name is Miriam I am 24 years old and I have NF 1. My mother also has NF 1 as did her father and two sisters; two of my first cousins also have NF1.
Miriam.jpg

From the word go I always had NF, my mother always told me she found out she had it when I was born. I have been to Crumlin Children’s Hospital for the genetic test and from there onto Temple Street to the wonderful care of Dr Brian Lynch.

Though I live by the motto “I may have NF but NF does not have me”. NF plays a major role in my life, I have learning problems and needed an exemption from Irish in primary school. I also needed extra support in other subjects and struggled to get this, but when I got it, I always had through to secondary and third level, to which I have a degree in social studies, and I strive to help those in a worse position than me.

Form birth till now my hearing has been effected I am 60% deaf in my left ear at my last check-up, and this has often depressed me, because when I was in college I struggled to hear what the lecturer was saying, though they are brilliant and have always told me come up and ask questions after class. My learning support tutor had also researched NF and supervised me with the facts. She also got all the support I could have wanted to help me through college.

My eye sight is really bad without my glasses I am blind. I see my local eye specialist and recently I saw an ophthalmologist in Tallaght under professor Lorraine Cassidy. I now see Dr Dominick McCabe every 18-24 months and have a MRI full Bloods done to check if I doing well. At present I have noticed a few bumps growing on my body, back visible and growing outwards, Hand and face though they are under skin.

I also feel work capabilities have been affected due to my hearing loss, I did not pick up on things that my supervisor used to tell me, and this led them to think I was too slow for the hotel and in turn affect my confidence. What scares me the most about having NF is I do not know what the future holds for me?

My mother had to have an operation on her adrenal gland because of the NF, her lumps are way more visible, and my mother get really down because of people pointing and staring. My mother never got support in school she was seen as stupid, not trying hard enough, too lazy, so she never got to do her leaving cert.

I am sure of one fact NF will not tell me how to live my life, it may tell me you need some support in health and education, work to achieve your goals, I am determined to get my Honours Degree in Social Studies.

Mary & Michael’s Story

Hi there, we have a little boy with NF1, Michael who we lovingly call birdie. He is a beautiful 18 month old little fella with a smile that takes up most of his little face. Michael is the first person in our family to have the condition so we are kind of dancing in the dark with it and bumping into everything.

He has a very enlarged head and was born with a plexiform neurofibroma on his left foot which it appears now has company as he is developing large swellings on the balls of his big toes on both feet. He has several white matter brain lesions; the largest of these is just under 3cm and is on the frontal lobe of his brain. The second largest is 2cm and is on his cerebellum, the others are little ones scattered over the brain. He has a curve of his upper spine which is mild (thanks be to god) and he also has a tilted axis of his stomach and is on reflux meds daily.

At 18 months he is still on a diet of formula and liquidised solids, so he eats things at a thick soup consistency and we sometimes get adventurous and give him foods that dissolve in his mouth in tiny portions as he struggles with chewing and tends to projectile vomit, heavy solids.

Michael has only started to sit himself up and clap his hands a little. He doesn’t crawl, walk or talk yet but he will, (I just know he will) he babbles a lot and has a supported walking frame to get him started but it’s a slow process. He loses his breath at times as he chokes on his saliva quite often and he zones out into little staring episodes where he just doesn’t react at all. This was scary at first but we have gotten used to it. So we don’t panic anymore.

Michael loves to put everything in his mouth and likes to lick and mouth things even people, so if you stand to close he will start chewing on your sleeve … we get some funny reactions in public. But despite all of this, he is the most beautiful boy in the world. He is loved and I really think he knows it and that’s the most important thing in the world to us. The rest, well the rest is gravy.

I hope some of this info is helpful and doesn’t bore you. I hope you have enjoyed our story so far.

Gillian’s Story

Hi I myself have NF1 and I am 31, I have had numerous problems related to NF including my spine which I now have a spinal stimulator which has done wonders and those horrible headaches. All my life I always remember pain, peoples responses wasn’t great, maybe because they had no idea or even heard of what NF was. Despite all this I studied intellectual disability nursing in trinity, and have 3 beautiful children, twins and a 12 week old baby. All 3 have NF.

Professor Green diagnosed one of the twins when he was around 7 months. He was seen so quickly, partly because I knew what to look for and because he was very sick. The other twin, a little girl and my 12 week old were diagnosed with NF1. One of the twins has a number of problems and learning delays and one has had very little problems, both are very clever and beautiful. My baby is still quiet young so it is difficult to determine how NF will affect him, but whatever the years may bring. We wouldn’t change them for the world.