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Post by mowbrayflats on May 19, 2008 9:29:20 GMT -5
Hi All
I am new hfi just found at at age 49 we are not alone both me and my sister have never been able to eat anything sweet wont bore you with all our history but we had sister that died 1 year old found to have liver twice size normal my surviving sister also had same problem doctors said she would not live so mother took her out of hospital to nurse her and fed her on anything that didnt make her sick and she made full recovery doctors were amazed and had no idea about hfi long time ago but im concerned now with possible liver problems in old age also sympathise with anyone that actually likes sweet food and has to go on this bland diet luckily it makes me feel sick so no problem.
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Post by julienc on May 19, 2008 10:39:51 GMT -5
Wow, what a story. You wouldn't bore me at all with the details - I'd love to hear your history. And how terribly sad about your sister. You mom was a sharp lady to figure out how to care for your other sister when the doctors gave her no hope. Are you the youngest? Do you have any siblings who do not have HFI? How did you eventually come to a diagnosis? It seems that as long as we stick to a fructose-free diet, the liver seems to do just fine. We have some older members who can give you more insight (Fred  ). So glad you found this site. May I ask how you came across it? We've had a lot of new traffic lately, which is great! Just curious how people are finding us. |
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Post by Tammy on May 19, 2008 10:42:37 GMT -5
Wow, what a story. Sounds like you have a very smart mother. Had to be very hard for her to do on her own, especially after losing your sister. I can't imagine how she even knew where to start.
I actually have the greatest respect for all the mothers of the adult HFIer's. I know that had I not been lucky enough to get the DX from our Drs that I would have lost my baby from liver failure. I know when the kids got a little older, the mothers let them eat what they felt good on, but how they managed when they were babies is what amazes me.
Now that my daughter is an adult, they do liver function tests to keep tract of what is going on. She is doing fine. It's something your dr will probably want to do now that you have the DX.
Is this DX something you figured out on your own, or did the Dr's finally figure it out?
Tammy
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Post by colormist on May 19, 2008 12:25:50 GMT -5
That is a crazy story! Do give more details. I'm always amazed at how others managed their lives with HFI. Julie and I have near identical stories, but there are so many different ways HFI lives could lead out.
I'm really glad your mom had the common sense to not listen to a doctor and actually take care of her kids herself. I know there are some instances where a doctor can help, but when things aren't getting any better in a hospital, sometimes it's easier and better just to go home.
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Post by Bonnie Ruskin on Sept 25, 2008 4:59:37 GMT -5
8-)Hi everyone
I am 50 and had an official diagnosis of HFI at 36! My sister died of the disease at a few months, when I was born a year later I was very very poorly - they took me in to hospital and fed me a total zero sugar free diet including lactose. I came out at 9 months and I am still here to tell the tale!
As for getting old with HFI I would like to know if common ailments are exacerbated by the disease? I was completely through the menopause by the age of 47 and my eye sight changes for the worst every year - is this common? In the UK there is no support for HFI as most Dr's don't know about it and so don't recognize it as a problem - which is why my sister died no doubt. Take care of your daughters and always err on the side of caution is my motto!
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Post by mowbrayflats on Dec 27, 2008 16:58:16 GMT -5
Hi again
Forgot about this forum thanks for replies, I am the oldest and male my sister is 44 we both have children with no related problems we are from uk by the way the way I diagnosed was because it was so unusual for 2 children from same family to not like anything sweet just thought must be a name for it and searched for sugar intolerance by reading other peoples stories was so obvious and from our history tying in with liver failure seems strange why both my sisters ended up in hospital and I did not when I was first born just funny story for you in uk they used to sell what we called lucky bags which consisted of bag with sweets in and a toy we used to buy them keep the toy and give sweets away which must have made us look very strange to friends sorry cant remember how came across site was just searching in general as for living life we never craved any sweet food because always disliked taste probably our defense mechanism another question alcohol I don’t seem to get any problem drinking as long as not sweet this normal also not sure if its related to hfi but my immune system to colds and flue is shocking only have to walk past someone that sneezes and catch cold ,ps at the time my second sister survived doctors were so amazed she lived there was an article printed in the lancet which i am told is a medical journal it must look very silly now.thanks or listening hope ll well.
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