More up to date Information

[kcchater]

Does anyone have more up to date info on HFI?everything is so outdated and it says it’s a common thing 1 in 30000 people however out our children’s hospital in British Columbia Canada we are only the second case ever.
I would love to read more literature regarding HFI.
Some days are just hard !!
Thanks son of HFI mom

[rysmom14]

Hi!

I haven't had any luck finding any new materials or even physicians that have worked with HFI patients. we just had my sons yearly visit with genetics and saw a new Dr. and She has never treated an HFI patient, and they wanted me to expand my sons diet. She handed me a print out that was laughable. It was the first thing that came up when I googled HFI Diet. I keep being reminded that sometimes they don't know any better than me and that living with a condition ( or in your case and mine, having kids with a condition) makes us a very reliable source of information. Currently there are only 3 cases of HFI at the Childrens hospital that we go to in the United States. I try to trust my gut and double check everything that I get about his diet and try to make the best decision I can.

Some days are hard, and I know that I feel isolated some times too. that's when I try to reach out on this board for some support. being around others who are living with the same thing and being more connected even though we are all in different areas around the world is helpful.

[colormist]

I have been to many different doctors and none have had hands-on experience with HFI. Most treat me like I'm the expert and they're learning from me (which is nice). I did have one geneticist that said his colleague had diagnosed at least one infant with HFI.

I don't think we have any literature about HFI. Most articles I find that even mention the disease are very wrong. If they're dangerously wrong, then I write the author to let them know what they're saying will kill someone. The rest of the information I've found is in medical journals--which are behind a paywall and extremely difficult to comprehend (unless you have a medical background).

I did find a couple videos on youtube that were informative. It helped me understand what was going on in my liver when I ate bad sugars. I still have no idea why my liver hoards glucose, but livers be livering.

[rysmom14]

livers be livering is so true.

the gastro doc we see was from Ireland and he is the only one who I have known of that has actually treated HFI patients. He followed twin sisters in Ireland from the time they were young and then lost touch around 20 years old. he is a very reassuring Dr. and has a more laid back approach. sometimes I appreciate that and other times not.

[kcchater]

Thank your for listening . I’m all for researching things out but it’s tough when we can’t even agree on how many people there are like us with HFI!