Wednesday, August 8, 2007

Hemophilia Education

When the boys were little, especially when #1 was born, there was a fair amount of information available about what hemophilia entails. There was one book in particular that I read cover to cover. It was informative and filled with personal anecdotes.

There were also books and pamphlets put out by the National Hemophilia Foundation, various homecare companies, and drug companies. No one source really hit the nail on the head, but combined we had a fairly decent picture of what was in store.

Or so we thought. Looking back, none of the materials were totally accurate. The "bible" of hemophilia literature, put out by another mother painted a grim picture. And none of the materials really focused on Hemophilia B specifically. We were told that Hemophilia B was different than Hemophilia A and that we would have an easier go of it. Which is true, but that doesn't make a new parent feel any better.

Sure, we B's bleed less frequently. Sure we had a recombinant product pretty quick. But that's still the only recobinant product we have. Product choice? Not if you want a recombinant product. And if you have hemophilia B and an inhibitor. Nighmare city.

And in terms of what's available NOW for new families? I don't know if it's really that much better.

I primarily see one voice in the world of hemophilia educational materials. It's one mother who has managed to corner the market. And what frustrates me is that she doesn't experience hemophilia very much like those of us who deal with severe hemophilia. In my opinion her family's experience is not what most of us deal with. And there's little to nothing from the older members of the hemophilia community.

I think new parents need to have all the facts; especially concerning the HIV/Hepatitis crisis that hit the hemophilia community. And that's very much glossed over these days. I don't think that our educational materials stress the importance of blood safety nearly enough. I think that this information should be part of hemophilia 101. While the drug companies and NHF may not want to rehash their mis-steps and failures, it's vital that they own up to it all so that consumers can make sure it never happens again.

In terms of educational materials, I've seen many ideas proposed and brought "to the table" only to have those ideas twisted and molded into someone else's vision of what families need to know. I've seen materials edited and "dumbed down" because someone thought we consumers wouldn't understand all those big words. I guess I resent that one voice or person seems to be regarded as the model of parental advocacy and the last word in what is or is not appropriate to teach families. I don't like the notion of others deciding how much or what type of information is available to consumers.

I think we should raise the bar and ask people to expand their knowledge and understanding rather than assume they can't handle it. I don't think that any one person or organization should have a monopoly on educational materials. Let's open the door to some new ideas and information sources.

My boys want to hear from the generations ahead of them. They want to know what's in store from the guys who have been there and actually experienced these things. They don't want to hear a Mom's perspective on the teen years or college years. They want information by and for that age group. And I want it to. How we live and how I deal with their growing up will be different from another Mom's experience. I want to hear a young guy talking about how he chooses to tell his friends and potential girlfriends/boysfriends about living with hemophilia.

But maybe that's just me.


wolf in sheep's clothes said...

It's nice to know that you want to hear from the older guys. I stayed away from the community for many years because I was afraid that the new parents specifically didn't want to see what it was like. I've been very pleased with the response since I "came in".

mama o' the matrices said...

I want to hear it, too! But one time when we put out a piece on managing hospital visits, we got angry emails and a pissy phone call. One young mom actually threw away the publication, because she refused to believe that you could actually have to deal with it.

Nope, many views, and all of them should be heard. As far as I'm concerned, that young mom is fine by me - you don't want to read it, then don't. Just don't shut out others who do.