Frequently Asked Questions
A lot of people believe that the truth about G6PD Deficiency should be withheld from people. They think that you aren’t able to handle the truth. They think that as long as you don’t know babies are dying from ignorance at the hand of doctors, everything will be swell. I’m not one of those people. Personally, I’m tired of the horror stories about babies dying because the doctors didn’t know they had G6PDD, or worse, didn’t know what to do if they did. So the following are very candid and straight forward answers to some of the more common questions I have received over the past seven or eight years.
About G6PD Deficiency
No. G6PDD is a life long condition. G6PDD symptoms can be worse at certain times in a person’s life. For example newborns, adolescents and older people are the most prone to the negative affects of triggers. However people of any age can easily succumb to extra stress, colds, flu, or an infection, as these are the most common cause of acute hemolysis. That doesn’t mean that they aren’t affected at all during other times. Because the G6PDD symptoms often become less severe as a child grows, does not mean that they no longer have to avoid the triggers. I cannot stress enough that despite popular opinion, everyone with G6PDD will be healthier in the long run if they avoid triggers throughout their lives. I am living proof that chronic, undetectable lower levels of hemolysis (loss of red blood cells) is very hard to detect and can lead to much more serious medical problems later in life
A person can be tested for G6PDD at any time in life. A cautionary note: after a hemolytic event (loss of red blood cells) test results can return a false negative. This is due to the fact that younger red blood cells have more G6PD than older ones and so the older RBC’s die first. This leaves the younger blood cells (which have more G6PD) to be tested for G6PDD. A person should avoid triggers for several weeks and wait for blood levels to return to normal before being tested for G6PDD.
Females are the hardest to test and most of the time test negative even if they have G6PDD. The most accurate test, especially for women, is the G6PD Quantitative test. But I’ve seen it fail at times. Read Women with G6PD Deficiency. The one test that never fails is having a boy with G6PDD. The mother has G6PDD…guaranteed because boys can only get it from their mother.
Test results can vary greatly depending on hemolysis level. Fewer older red blood cells will skew the results toward less severe G6PDD. This means that for a few weeks after a hemolytic event, the test results will not be correct and can even be negative. (Read: http://g6pddeficiency.org/wp/faq/can-person-tested-g6pdd-birth/) A less severe case of G6PDD can actually be more harmful than a severe case because people with less severe G6PDD tend to think that they don’t have to be so concerned about avoiding triggers and ignore these diet suggestions. This leads to much worse health problems later in life and can even cause a hemolytic crises. Knowing you have G6PDD and taking appropriate action is the best way to stay healthy and avoid G6PDD complications.
When our bodies are working extra hard to replace red blood cells at a higher than normal rate, our heart, liver, renal, spleen and bone marrow are over worked. Nutrients are depleted. The weakening of these organs can cause a myriad of health problems as our bodies age, even if you only experience low-levels of hemolysis. If you have G6PDD, you have a higher than normal chance of getting diabetes, liver disease, heart problems, etc. It is not uncommon for people with G6PDD to be misdiagnosed with a disease in which the treatment could be life threatening. Once these diseases start manifesting themselves, it is rare that the condition can be reversed.
You should feel like the luckiest person on earth that you know the truth and can avoid these problems and live a life that is much healthier than many others who don’t have, or don’t know, they have G6PDD. Many people have died because their doctors didn’t know a patient had G6PD deficiency. These people were given treatments which caused acute hemolysis. By the time the doctors discovered what was wrong, it was too late. Being proactive and sharing a positive attitude with our families will make a huge difference in how we take care of ourselves.
G6PD deficiency (G6PDD) is a genetic disorder and cannot be acquired any other way except through the person’s parents. A boy can only inherit G6PDD from his mother and a girl can inherit it from either parent. Women are very hard to test for G6PDD and usually test negative, even when they have it. The best indication that a woman has G6PDD, is if she has a son who is tests positive for G6PDD.
For more information see Women with G6PD Deficiency.