I have primary immune deficiency and have to give myself gamma globulin (IgG) IVs evey 3 weeks. The medication costs $6000 every time. I also have NO (none, 0) IgA, the immune globulin that is present in human milk. It is actually not all that rare to have low levels of IgA, it is estimated that 1 in 400 people have low levels of IgA. These people get more sinus and ear infections than normal and may have digestive difficulties.
Each person with combined immune deficiency disease has pretty much their own disease. There are a variety of immune globulins that can be abnormal. In my case, my disease was adult onset. I became ill with recurring pneumonia and infections while pregnant with my youngest son 16 years ago.
I am actually among the oldest population of people living with sever immune deficiency at 48 because people with immune deficiences that were children before 1955 or so died because there weren't enough varieties of antibiotics.
I probably have had low levels of immune globulins my whole life and was sick a lot as a kid. My three children were all tested after I was diagnosed and all three have immune deficiencies (they were 6 mo., 5, and 8 at the time). They have all also had to have IV gamma globulin from time to time. My oldest had IVs every 4 weeks for about 2 years. I believe that all my children would have died if I had not breastfed. They all had major, life-threatening infections as babies or toddlers.
Someone did a study that was amazing. I figured that since I had no IgA that my milk would have no IgA. A study found that mothers with low IgA produced normal amounts in their milk. There were no mothers in the study with no IgA, a rare condition, so I am not sure my milk had IgA but it may have.
My second husband left me when I became ill. One of the reasons my first husband (father of my oldest 2) left was he couldn't handle the kids being sick most of the time. The children and I have survived on SSI and child support.
I must stay on Medicaid to pay for my medications. I can't work or I would loose Medicaid and have to pay the $7000 + a month for my medications. Without medications my life expectancy is 3 months. With proper medical care I may live to be 100.
I can't fight bacterial infections. The part of my immune system that fights viruses works great. I don't think I have ever had or cold or viral flu. My digestive system has been OK since I started the IV gamma globulin. I did know that I could get human milk from a milk bank if I start having problems.
My youngest son (16) and I live in family housing at a university and I am almost done with a doctorate in science. My oldest (25) is training to be a medical lab tech. He has the most health problems of my children and may soon have to start having IVs for the rest of his life. He is hoping he can keep a job with good health insurance so he doesn't end up in my situation. My middle son (21) lives about a mile from us and is an RN in cardiac care and the university's hospital.
Some people get upset and don't want to donate milk when they find out that it may go to an adult. I thought others might here about the kind of family that donor milk might go to.
