I had a reader ask me if I knew anything about the new gene therapy call Glybera. I don't or didn't know squat. I still don't know much and the reader most likely knows as much or more than I do. I had to look up Glybera in order to even know what the reader was talking about. Anyway ...
Glybera is a new gene therapy developed for the treatment of
lipoprotein lipase deficiency (LPLD). Lipoprotein lipase deficiency or LPLD is a very rare inherited condition that is associated with increased levels of chylomicrons and chylomicrons are small fat globules composed of protein and lipid (fat).
Symptoms of familial LPL deficiency usually begin in childhood and include abdominal pain, acute and recurrent inflammation of the pancreas (pancreatitis),skin lesions called eruptive cutaneous xanthoma and an enlargement of the liver and spleen (hepatosplenomegaly).
So in laymans terms what exactly is lipoprotein lipase deficiency or familial LPL deficiency? It's extremely high blood fat levels. I mean we are talkin HIGH. Not just a tad over 150 for triglycerides but maybe 2500 - 5000 or more. We are talkin HIGH blood fats. Anyway ...
I remember mentioning somewhere that I didn't even know high blood fats cause acute pancreatitis until I started writing about my experiences, joined a couple support groups (didn't know those existed either) and read a bunch of posts. I didn't know kids got this crap. I didn't know a lot of things except what had happened to me because in 1979 everone looked at me like a bull with a bastard calf and so when I finally got diagnosed I thought I was all by my lonesome. I figured if most doctors couldn't even recognize pancreatitis that it just wasn't to dang common and when I started doing research to find out how to survive the information was so hard to come by that I just figured it was a rare thing - I guess I was wrong. The GOOD news is ...
That those who suffer with pancreatitis due to high blood fats may be able to find relief via gene therapy and Glybera. I still don't know anything about Glybera. It's brand new, just on the market and it may not be available in the United States as yet. In fact according to
PRNewswire rollout doesn't begin until sometime towards the second half of next year but ...
If you suffer with pancreatitis due to extremely high triglycerides you may want to poke your doc and get him/her pointed in the direction of Glybera to find out if it may be something you should seriously consider.
Now one important note: A very low fat diet, preferrably vegan, or a modified vegan that includes some egg whites, fish and skinless poultry (not fried) and everything cooked without oil may help as well. In fact
John D Brunzell, MD from the University of Washington's School of medicine says "symptoms usually resolve with restriction of total dietary fat to 20 grams/day or less." Read here
IF you have truly tried a very low fat diet for at least 6 months to one year without success you may want to look into Glybera. If you get on Glybera let us all know how you do on it.
