Debbie
Message 1 of 1
Don't worry. I have it, was diagnosed 3 years ago at 48 years old. Brother also. What you need NOW is your ferritan done and rigerous phlebotomy NOW. I had it done every 2-3 weeks for 2 years. This is done to remove the iron stores from your body. After that, only about three times a year for life. If you have to have something, this is the thing to have. Don't worry about your joints. There really are no symptoms, it's just a killer if routine phlebotomies are not performed and you don't watch your ferritan levels. Don't let ANY doc tell you it is nothing. They have a habit of pushing it under the rug. One in 200 people in the U.S. have this. The CDC is trying to get the ferritan test into routine blood work. Don't panic. Depending on whether you are still menstruating, your levels may not be too high. How old are you???? Try to be treated by oncologists. They treat cancer and blood disorders. You definitely NEED a specialist. This is really not a big deal, once you get used to it. Be happy! Deb