Patient Comments: G6PD Deficiency - Experience

Please describe your experience with G6PD deficiency.

Comment from: baameaMOM, 55-64 Female (Patient) Published: April 03

I was first tested positive for G6PD deficiency at the age of 22 after I was given antibiotic for urinary tract infection (UTI). After the first week on the medications I started to have the shortness of breath, fatigue, bruises on my leg, difficulty walking, and orange urine. After lots of tests it was determined the cause was G6PD deficiency. Since then I have given birth to two daughters. I had both tested at birth for the deficiency. Tests came back negative. Even though the tests were negative we always were very cautious about what medicine they were given. My oldest daughter while off at college at the age of 21 was given nitrofurantoin for a UTI. We took her to the emergency room because of the rate of heartbeat, and fatigue. They could not find any cause and while she was being questioned I heard her mention she had recently been treated for a UTI and the name of the medication. I immediately knew what was wrong. I explained to the physician. He ran another test on her it came back positive for G6PD deficiency. Her hemoglobin was 8.0 that afternoon. The next morning it was 11. I am telling this story because maybe females carry the gene, it just doesn't rear its ugly head until after the first episode. My father tested negative for the deficiency.

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Comment from: Rosie, 55-64 Female (Caregiver) Published: July 27

When my son was born he had a mild case of jaundice. Then later on after several visits to the doctor to try and find out why he would throw up his food all the time and because he was so pale and quiet at 18 months old he was finally diagnosed dangerously anemic and given iron medication. It wasn't until his late 20s after joining the army that he was found to have G6PD deficiency. I am a 2nd generation Australian born English descendant, both my parents being 1st generation. I am wondering if I should ensure my grandsons are tested.

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Comment from: Nneka, 7-12 Male (Caregiver) Published: July 17

I only just received the test result that indicates that my 8 year old son is G6PD deficient. Most of the hospitals we've been going to kept saying he was anemic or probably has sickle cell disease. His doctor gave us a list of medications he should stay away from; anything with sulfur or quinine. Thank goodness he is making much progress with blood supplements and plenty of good wishes.

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Comment from: richjams, 45-54 Male (Patient) Published: April 30

I'm a black male 54 years old and I found out that I had G6PD when I was in the Air Force. I've had no known health issues with this, played sports all my life, been healthy all my life, never have been the type to take a lot of medicine. I found out at the age of 17, so my opinion is don't be so critical of G6PD, it's something that you can live a long time with.

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Comment from: Creamcheese, 7-12 Male (Caregiver) Published: June 05

My son is 7 and has G6PD deficiency. As an infant he was always sick especially after given medicines for cold and fever. His fever was always over 105, he would have rapid breathing and his urine was very orangish. I was not made aware until he was 2 that he had this, I had a lot of close calls before, not knowing. After we found out what it was and what to stay away from, he has been just about the perfect kid... until most recently during a regular checkup, his liver test is showing high levels of bile. Doctor states it's not from the G6PD but we are currently doing testing. He's very energetic and intelligent, no major issues. I really watch what he ingests.

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