Patient Comments: G6PD Deficiency - Experience

Please describe your experience with G6PD deficiency.

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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Comment from: Nikk Flowers, 35-44 Female (Caregiver) Published: May 19

My eldest son at age 18 months became ill with a high grade fever of 106 and was admitted to the hospital and treated with antipyretic medications. Upon discharge he was tested for G6PD deficiency and the results were positive for the disorder. His pediatrician gave us a list of foods and medications to avoid. Twenty years later I had a second son and I had to beg his pediatrician on two separate occasions to test him for the disease and he insisted that there was no way my son could have the disorder as he had only seen the G6PDD once in his medical career of over 20 years. After finally agreeing he gave me a lab slip and I took my 6 month old to a lab for the test and the results were positive for G6PD deficiency. Needless to say the pediatrician was very apologetic, he did give us a new list of medications and foods to avoid and told us to notify medical staff and my son"s school of his condition in the event of our son needing emergency medical treatment in my absence.

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Comment from: Morris, 65-74 Female (Patient) Published: December 23

I'm a 32 year female survivor of lupus SLE/discoid lupus/lupus nephritis at 70 years of age. I have a G6PD deficiency. Fifteen years ago I was given Plaquenil, had allergic reaction and saw lights flashing around objects. Two years ago I was prescribed Diovan, and then due to high cost the doctor changed the prescription to lisinopril. I had an allergic reaction, my tongue swelled hospitalized for observation.

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