Patient Comments: G6PD Deficiency - Experience


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Comment from: Reality, 55-64 Female (Patient) Published: April 23

My grandfather had G6PD deficiency and all of his offspring have it. My mother has G6PD (diagnosed after my oldest brother was born}, both of my brothers and I were also diagnosed in our early years with it. Over 40 years later, I have been tested twice for G6PD due to needing a stent and the results are 10.6. My cardiologist and hematologist say I do not have G6pd. Is this possible!

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.

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.

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.

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.

Comment from: Ghazanfar , 0-2 Male (Caregiver) Published: July 02

I have been feeling right side abdominal pain for the last 3 years. The doctor does not know what is causing my pain.

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.

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.

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.

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.

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.

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.

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.

Comment from: mr. few, 0-2 Male (Caregiver) Published: April 22

I have a baby girl who is 17 months old, and is now starting to feel the effect of G6PD deficiency. She is prone to viral infections, and feeding her is a big deal. Her weight is pulled down possibly because of the anemia. It’s hard to ask a child this young, because she can’t really tell you what’s going on.

Comment from: marilyn, 25-34 Female (Patient) Published: April 15

I have two babies -- a boy and a girl – who have a G6PD deficiency. I’m not sure what to do. I don’t know what kind of milk or vitamins to give them.

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