Stories from Life

Sam's Story

My name is Sam and this is my story.

I was born with cyclic neutropenia but my family didn't know it. Normally someone else in the family would have it because it is genetic, but in my case no one did -so it took a while for the Doctors to figure out what was going on.

In case you don't know what neutropenia is - it is a shortage of white blood cells called neutrophils. The neutrophils fight bacterial infections. Without neutrophils the body doesn't cope too well with any bacteria. I would even get sick from the normal bacteria that lives on your skin. Neutrophils are important for keeping your insides healthy. So when my count was low I would get ear infections, ulcers in my mouth and gum infections. I have had lots of times when my tummy hurt and lots of food I just couldn't eat. I have had pneumonia and lung problems and I used to get really tired because I got anemic too.

Living with neutropenia hasn't been easy , I'm lots better now that I have been on treatment [GCFS - granulocyte colony follicle stimulator]. I give myself an injection [with an insulin rocket - it helps!] every second day and it helps me stay well. I can eat lots of different foods now and my tummy doesn't hurt. My mouth isn't sore and my ears don't hurt. I still get tired some times but not like before and I'm able to play soccer and other sports and keep up with my team.

I have had to have lots of blood tests and I don't think they ever get easier, I guess I don't mind so much when they are finger pricks, but I really don't like the others. Still I don't have to have so many now that my blood levels of neutrophils are better.

At the beginning of the year I decided that I would like to meet someone else with what I have, I guess I just wanted to know how other kids manage, turns out there are not that many people with what I have and there is no real way of connecting.

Seems to me like there are lots of support groups, but none for Kids like me with neutropenia. The only group we could find is in Canada... So I asked my mum to help me start one for this hemisphere and a friend has been helping us.

I guess I just want to encourage people and have a chance to find someone with a life story like mine. Anyway hope the website is helpful and if you have neutropenia or know someone who does - we would love you to be in touch. If nothing else maybe we can help other people just know about what it is.