This is What We Have...NOT... Who We Are.

A friend of mine asked me to take a minute here to explain the kids disease, and what it means for our family. While I don't want it to define us, at the same time, I guess it's hard to really understand where we come from unless you've had the time to get to know us and our life.



So, here goes. Our kids, were born missing part of their immune system. Which is to say, what they have is called a primary (as in, born with it, or a genetic predisposition to it, not given it by some outside source - like a virus or immune suppressing drugs) immunodeficiency (missing immune system).

Our road to diagnosis was not an easy one, and someday, I'll write a big ol' series of posts about our entire journey - needless to say, as with anyone who has navigated the medical system, we've had some great doctors, and some that make me cringe to think they might be still practicing medicine. We know many who had a much longer, and a much more difficult journey. Our oldest child was 2y 10months when diagnosed, our daughter about 7 months, and our youngest 6 months, this is so so incredibly early. Our doctors were very aware, because in the US the average time from onset of symptoms to diagnosis, according to a study by the Immune Deficiency Foundation, is 9.2 years.

So what does this disease mean in day to day life? It means we are at risk for more infections, that are more severe, and more difficult to get over. It means we get every day infections (sinus, lung, ear, gi,) and more unusual ones (like the fungus among us). It means while they can't give you their disease, you pose a danger to them. We actively fight every single infection, because every infection poses a risk of long term damage to organs (like lungs).


Some things are a little more worrisome than others (like chicken pox, which is enough to make me run screaming for the hills), and what is an everyday thing like a cold, can turn into something more serious, like pneumonia.


To help the kids they all get IVIG. IVIG, can be called by many names, gammaglobulin, Immune globulin it's all the same. So, you might ask, what is it? IVIG is made from human plasma donated throughout the country, in case you are not scientific - think of when blood is collected and it settles - plasma is the clear liquid part of the blood that settles at the top while the red blood cells settle at the bottom. In the plasma are antibodies - and they are all collected, combined from people across the country, cleaned, processed and given to people like my children.


IVIG helps my kids lead more typical lives, like their peers. Because of IVIG, my kids go to school, Disneyland, the mall, the movies, out to eat (okay, not to a buffet), you name it, they can do it. They've even flown on airplanes.


Sometimes people ask me some pretty good questions about what they have. I'd say these are the top two most asked questions:


1. Is it genetic?

The answer to this is, in all likelihood, yes, it's genetic - and we suspect it is on my side of the family. However, as the gene has not yet been found, it can only be called familial - which means, it runs in families. My husband and I have both been tested - neither of us currently have it - however, that does not mean we could not end up with it in the long run - many people can live healthy lives and one day something triggers it, and suddenly they have it as well.


2. Will they out grow it?

This is always a hard one - the answer is - Probably not. There is an immune problem -that is called Transient - however, mostly those kids outgrow it around 2 some as late as 5 - and my kids have not yet outgrown it at 7, 5, &3. We varies seriously doubt it will ever be outgrown, as do our doctors - and we NEVER present it to the kids as if it is even possible. If we did, and they didn't outgrow it, they would likely blame us.


So, if anyone reading has any questions - ask away - I'll happily answer anything posed to me (and trust me, I doubt anyone can come up with anything I haven't already been asked).