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       Hypogammaglobinaemia

  Hypogammaglobinaemia is characteristic of a primary immunodeficiency. This immune deficiency is not suppose to be heridetary but one of my four children ended up with it and two of my other children had different forms of immune system deficiencey. This type of deficiencey is not normally checked when your primary docotor runs test on your immune system. This test usually takes around three weeks to get the results back and then it is up to your doctor to determine what course of treatment you need. I know that when I was finally diagnosed with this my doctor tried to reboost my immune system with a pneumonia shot it didn't work for me however it did work for my children.

The treatment that I first recieved for this illness is was IVIG infussions which is was done every 3 to 4 weeks in my doctors office. It takes anywhere from 6 to 8 hours to recieve the infussion however I did start to have reactions to this and was switched to Vivaglobin infussions which I do at home twice a week. This type of infussion is done in the abdomen with anywhere from 2 to 4 very fine needles and is absorded thru the fat in your stomach.

The cost for this treatment is very expensive it can run anywhere from $11,000 to $25,000 month. With costs like that I don't have to tell you that the insurance companies are pretty hardcore about paying for it. For me I was approved pretty easily but just a few short months later about the time I started having reactions to the medicine the insurance companies changed they way they paid benefits for this. I ended up going almost three months with out medicine waiting on the insurance company to authorize my approval for it. Finally my doctor put me in the hospital so I could recieve it. See the insurance company has changed it so that the doctors can no longer afford to do this in their office so they have have a home healthcare agency do this for them.

I wrote my story about my journey with this terrible illness to give hope to others with this same illness. I know that not every person will have the same outcome but it does help to know that you are not alone. Read my story and please leave any comments you have wether it is about your own journey with this exact illness or a different one. For me writing about this has helped me alot. I am able to express myself instead of keeping it all bottled up. I have a wonderful family but even they will never understand what it is like to go through something like this, I felt so alone most of the time.

S. Norris

Aurora Colorado