At the center of hemophilia, we have cases of kids and adults with inhibitors which is another aspect of living with hemophilia. 20% more or less of the population can develop inhibitors against factor 8 or 9. Remember what I wrote in my monograph “psychosocial care for people with hemophilia….”? As care givers and parents we will discover HOW each son develops his hemophilia. Well, it is about how to cope with so many details and facts that arouse through the process of living .
Just to explain in a simple way: if an hemophiliac has “inhibitors” it means that his blood doesn’t clot with the regular factor 8 or 9 replacement the immune system has reacted against the factor and see it as a strange ” dangerous” presence in blood. So, the solution to first stop the bleeding is : to use another thing called BY PASS AGENT that helps clotting and solve the bleeding problem.
Another intervention is to eradicate the inhibitors and this can be done successfully with the called Immune tolerance inductive therapy: a big amount of factor is delivered into the blood stream making the immune system get use to the factor and no more reacting against. So, most of the kids who developed inhibitors will have big chances to not have them with the treatment available.
Nowadays, we have specific fator replacement and we can put a catheter to relief the tiny and fragile veins of our babies.
The emotional aspect of it is ….acceptance and have a pro active attitude ! I can accept i have something not functioning in my body and in my mind (which are so much connected and mixtured) and after acceptance quit or face it gently and with courage
I am almost finishing the preparation of flash cards for INHIBITORS and topics related! IN-HEMOACTION :)