HFI Association

[colormist]

So this is interesting...

My employer (a health technology management group) is looking for other "businesses" to help manage. They know about my HFI, because it seems impossible not to mention it when people shove food in your face. My coworker just asked if there was an HFI Association and wanted to know my thoughts about starting an association with my current employer. If that was too small of a pool of patients, she also asked if there were similar conditions that we could lump together--that might compliment one another.

Also, in this same avenue, a couple years ago my friend (who has her PhD in health education), in a fit of inspiration, wrote up a HUGE how-to guide on starting my own HFI Association. How to go about raising funds, reaching out, getting grants, raising awareness.

I emailed back my coworker and let her know about lumping Inborn Errors of Metabolism with HFI or taking the FM + HFI avenue.

I was wondering if either of these covered what you son has, Charlie. You seem to find lots of overlap with HFI and pursued that diagnosis when he was younger. Is there possibly another grouping I'm not thinking of?

HFI + FM seems to be the angle that might raise the most awareness, but could potentially be a dangerous way to overlap these two conditions. They are somewhat related in food-intake, but not at all in diagnosis, symptoms, or how a patient acquires the condition.

Honestly, right now I feel like the world is forcibly pushing me in one direction and I'm reluctantly being drug along for the ride.

Looking forward to any feedback, thoughts, or concerns you might have about the HFI Association.

[charlie]

Wow, exciting idea. I would say you would be one of the best people to do it too.

As for where to go - I assume you mean me although last time I looked i had a daughter.....

What format would it take, information only, raising funds for research?, supplying literature, resources etc?

As for what to include, I would start one step at a time. FM as you say is whole different world to HFI and the diet for many can include sugars and alot of fruit and veg so you could risk confusing the picture. Also it is a whole different mechanism and not necessarily congenital. How about starting with HFI and branching out into the other similar condition that totally escapes me at the moment as alot of internet catching up to do - is it 1-6 glucophosphate or something like that, will get back to you in a few days, the other ones that involve the liver. To branch out early into all the inborn errors would be opening up a massive pandoras box. There is a society in the UK called CLIMB, they cover everything and their list is massive but it might be worth checking through their list for similar conditions.
Down the line CSID may be worth including as it is also congenital and very little known and similarly restrictive diet. The other conditions we eliminated were Glycogen Storage Disorder and Glut1 deficiency.

Anyway that's my ideas for starters, great idea though, you go for it, your info on here and on your blog has inspired many so building it into something bigger would be fantastic.

Charlie with a daughter......

[colormist]

LOL! Sorry Charlie!! I will never ever forget you have a daughter now.

Thank you for the feedback.

[tummyache]

I was going to suggest something like Charlie... Hereditary Carbohydrate Disorders of Metabolisms...or more specifically Hereditary Disorders of Sugar Metabolism. That could include lots of rare things. [That reminds me, I've been wondering how whoever-it-is decides wither to call a disorder "congenital", "hereditary"; or "genetic" or do they just randomly choose which sounds the best?] I haven't been on this HFI forum lately after getting the DNA results back with a strong positive for CSID after it was negative for HFI. Charlie's experience got me to looking into it -- Thanks to Charlie I know now!]. I guess the doctors were wrong years ago! I've been doing diet experiments lately and finding some real interesting surprises. I must be super sensitive to sugars though, as I am finding I'm still not tolerating anything but dextrose/glucose and have an aversion to sweets.

[tummyache]

somehow posted 2x's