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PNH Support Group FAQ (Frequently Asked Questions)



Category: Main -> WHERE DOES PNH COME FROM?

Question
·  How did I get PNH?
·  Will my children get PNH, too?
·  Is there anything I can do to get rid of PNH?
·  Do any PNH patients get better on their own?
·  How long can I expect to live with PNH?

Answer
·  How did I get PNH?

In some cases people can identify how they might have acquired PNH. Exposure to some chemicals such as benzene or certain antibiotics such as chloramphenicol may cause the changes in bone marrow cells that lead to PNH. However, in most cases, we will never know what caused us to get PNH.

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·  Will my children get PNH, too?

No. PNH is not a disease that you can pass on to your children. Although PNH is caused by a genetic defect, it is an acquired defect that is only in the bone marrow, not in the sperm or egg cells. Because it is not found in the reproductive cells, it can’t be transmitted to your children. Research is currently underway to try and determine if there is a genetic component or a genetic predisposition to bone marrow failure. Right now, we just don’t know.

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·  Is there anything I can do to get rid of PNH?

The only cure for PNH at present is a bone marrow transplant. Changing your lifestyle by eating particular foods or taking certain supplements may help you cope with the symptoms of PNH, but these things will not make the PNH go away.

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·  Do any PNH patients get better on their own?

Some people with PNH do experience a spontaneous remission. Some patients seen at Duke University, for example, experienced a spontaneous remission. The type of person most likely to experience this is someone who has had PNH for a long time. However, having PNH for a long time is no guarantee that the disease will go away. One member of our group has had PNH for more than 40 years. The first 20 years she had the typical symptoms of PNH such as dark urine and fatigue; the second 20 years she had no symptoms at all. However, after 20 years of no symptoms, she experienced a life-threatening clot. So unless laboratory tests confirm that you have experienced a remission, it is wise to continue to be monitored regularly by a hematologist.

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·  How long can I expect to live with PNH?

Some articles quote statistics saying that the average PNH patient lives 10 years after diagnosis. This is an old figure that we believe is inaccurate for several reasons. First, in the time since this statistic was calculated, new treatments have become available that give PNH patients more options than they used to have. Even more treatments are in the process of being developed. Second, this statistic was based on patients who were very ill. Many people with PNH live quite well with their symptoms for decades, giving us good reasons for optimism.

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