Patient Comments: G6PD Deficiency - Experience

Please describe your experience with G6PD deficiency.

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: Ana, 3-6 Male (Caregiver) Published: February 11

I am a mother of a 3 years old boy, a G6PD patient. I'm worried too much because my son's condition is not good, he always vomits when he eats the food. He has a stomach ache and paleness of skin. The doctors have given him so many medicines and vitamins already but still his situation is the same. He has wet lungs too so until now he is under medication.

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Comment from: Two sons, 45-54 Male (Patient) Published: February 06

With G6PD deficiency I have problems with my breathing, I have gained weight, and my doctor keeps telling me to lose weight. But I'm short of breath if I walk the treadmill with an incline or add a little more speed. I can't walk too fast because of shortness of breath as well.

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Comment from: 65-74 Male (Patient) Published: May 07

G6PD deficiency is not a recessive trait. This was proven in the early 1960s by two separate research groups. Women are also symptomatic and are affected according to the laws of lyonization. Actually, more women have G6PD deficiency than men. There are other foods that cause hemolysis besides fava beans. Moth balls are another trigger and can be deadly to those with G6PD deficiency.

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Comment from: ifelyou, 55-64 Female (Patient) Published: November 06

I am 55 years old, a mother of 5 who are all over the age of 21. I am a carrier of G6PD and all 5 of my children have it and their children too. And my great granddaughter who is 8 months old.

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Comment from: TIN, 0-2 Male (Caregiver) Published: August 30

I'm the mother of G6PD, a 1 month old male patient. Sometimes he was irritable but he sucks very well. But why he cries when he was stretching? What was the relation of his disease when he cries while stretching? And what will i do to ease and prevent the g6pd? And what food i will avoid and what perfect foods i need to eat because ill breastfeed to my son?

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Comment from: honey, 0-2 Female (Patient) Published: June 05

I have a newborn baby boy and his screening test detected that he has G6PD deficiency. I don't know what to do about it.

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