"My friend Sterling Hill from New Orleans asked me to contact Dale" at this organization. I am working with a family who lost a 7 week old baby to G6PD complications*.. and we need help providing a doctor and information to the attorney who is willing to take this case out of Mobile Alabama. If this message reaches Dale, Please contact me "
There are an estimated 700 million G6PD Deficient people worldwide, yet only a small percentage of them know they have it. It is the most common enzyme deficiency in the world and is passed to others genetically. Unfortunately, not knowing can be very dangerous, especially for newborns.
Meet Gin Hon. He suffered from a common G6PDD complication of very high bilirubin shortly after birth and had to be put under 7 bili lights to lower the bilirubin and prevent brain damage or death. Many G6PDD babies aren't as lucky as Gin Hon. The really good news is that it is easily preventable. But you have to know what causes it and you have to know that your child is G6PD Deficient. That is our goal.
Knowing that a child has G6PDD takes from hours to days. Both are too late to prevent high bilirubin so we have been working with a medical manufacturing company for about five years to develop a way to find out if an infant or anyone else is G6PDD in just a few minutes. Testing for this device has just been approved.
Knowledge is power and most doctors either have never heard of G6PDD or know very little about it. We are working with them to change this. More and more doctors are becoming aware of G6PDD and are learning how to manage it. But we need to reach many, many more. To do this we need to create a non-profit foundation, which we are in the process of doing.
Child getting a blood transfusion after ingestion of a G6PDD trigger.
When people do not know they are G6PDD, over time, mismanagement can lead to many other health issues, including mortality. Again, completely preventable by simply knowing what foods and medicine to avoid. We're back to knowledge is power.
We are in the process of developing tools that will help G6PDD people understand G6PDD and how to manage it, including an Artificial Intelligence powered app that will run on all common computer and phone devices. It is currently under development.
Blood transfusion after eating fava beans.
We have a website (g6pddeficiency.org), a Facebook group with volunteers to help teach people about G6PDD, a newsletter, books and pamphlets and other things to help those with G6PDD. And more are being developed.
All of these things require money...lots of it. Please consider donating whatever you can afford today to help us help G6PDD patients. It only takes a minute and you will be helping us help 700,000,000 people worldwide. If we could prevent just one death or brain damaged infant, it would be worth it. But you have the opportunity to help millions.
Thank you so much for taking the time to read our message. Please tell others about G6PDD and give them the chance to make a difference as well.
As little as five dollars today will be a great help, but if you can afford more...that would be awesome.
DonationsSee top donations
- Niloofer Darbary
- Hardeep Singh
- Arnitha Masenheimer
Fundraising team: G6PD Deficiency and Favism (18)
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