Honest Abe’s blog, a catch-all site for video games and science, can now add rare disease champion to its description.
The real Honest Abe was known and will forever be known for helping others.
The blogger for Honest Abe hopes to continue that legacy by sharing his experiences living with Glut1 DS, including his most recent visit to the Glut1 Deficiency Foundation Conference held in Orlando.
The Glut1 Deficiency Foundation has been championing for Glut1 DS awareness through educational and research initiatives.
Honest Abe describes his Glucose Transporter Type 1 Deficiency Syndrome (Glut1) as a genetic disease that “directly involves the blood brain barrier.” Brain Facts describes the blood brain barrier as the brain’s bodyguard that allows good nutrients to enter, but all the baddies to stay outside. When this begins to malfunction, as Honest Abe explains, the result could lead to epileptic-like seizures. The prolonged damaged to the brain can lead to long-term damage for some Glut1 DS patients.
As a patient of this disease himself, Honest Abe is not alone. Though rare, the disease has exceptionally more cases than it did 20 years ago. The blog describes that in 1991, there were two recorded cases of Glut1. Now there are more than 500 cases, unfortunately children have been included in that as well. That number could grow much larger if the whole epileptic community is evaluated for the rare condition.
As far as treatment is concerned, Glut1 patients are typically faced with one option—a ketogenic diet. Meaning, a diet that consists of 65-percent fat and less than 10-percent sugar. This forces the body to rely on ketone bodies as a source of fuel.
Though tricky, this diet is capable of being maintained, however, not surprisingly, teenagers have the most difficulty with it. They’re forced to resist that Dorito urge, that chocolate chip cookie urge, and even that ice cream cone urge on a regular basis.
The conference was a positive experience for patients, including Honest Abe. Patients were able to come together, get to know each other, touch base with current sciences, and ask questions.
As for the next conference, Honest Abe will be front row and we are looking forward to the good news he reports next.
Share Honest Abe’s story and help this dead president get the word out about Glut1 DS!