Is there a HFI convention or conference anywhere ?

[ukbill]

Shan, Welcome to the forum..

Two HFI'ers in your family.. how rare is that?

How old is your mum now? We may have to divest Fred of his "crown" as being the oldest known living HFI'er!

Yes I was "saved" by my Grandfather feeding me the corner of a loaf of bread smothered in dripping form the Sunday roast!

The good old ways of cooking and eating are best, particularly for HFI'ers My granddad lived to be 86 and today would live longer because he died from Prostrait problems which now can be controlled (for some time). He was 56 when my mother was born and she is now 88 and still going strong! So he was born back in Victorian days something like 144 years ago!

I still love the black or dark brown jelly which collects in the bottom of the dripping.. I love dripping too but I think I have a problem with Gall bladder because it don't like me anymore and if I eat too much fat in one day I get very burp'y and feel deep discomfort in the middle of my chest for many hours afterwards.

I made some wonderful semolina pudding the other day and put some double cream and unsalted butter in it .. it was wonderful stuff but a very large bowl of it had me feeling discomfort for about a day afterwards..

I too are sumwhat disgusted in Climbe what it was RMTDC before it was "re-branded" they were absolutely excellent and really helpful.. it seems helpfulness went out the window with the corporate re-branding about 5 years ago!

I might give them a ring and ask them what they are playing about at.

They support and fund research and offer support into Genetic diseases which occur at a far lower rate than HFI.

Its about time we with HFI started SHOUTING about our condition! Too many of us live a life un-diagnosed and with a low health levels as a result., not to mention the vast number who must be dieing as babies or young infants. possibly the most of us.

Having lost a young child I really cannot sit or stand around and not do my utmost to help any parents avoid having to go through what I / we went through.

I cannot do this all alone.. I need both support and help with letters and emails to people to get some blasted sense into the complacent medical profession / health workers.

Perhaps we can have a new section on the forum.. called "activism" where we can share and post information on the people we need to give either a polite nudge to or a damn good kicking to get their act together correct inaccuracies and misconceptions that are rife in the medical profession about HFI?

[shan]

Well, mom had three in her family! Yup, I guess you realise something's amiss when the geneticist tells you the technical term for it is "Bloody Bad Luck"!

Mom is now 77 - she'll be chuffed to know if she's in with a chance.

Yes, we need to make some noise about HFI. Would love (not the right word but you know what I mean) to see some research commissioned that looked into the dietary habits of 10 year olds with unexplained liver failure. Bet there's some interesting correlations there...

[hfimomof3]

Celiac, diabetes, and lactose intolerance are all much more common than HFI. How about one of the over 1200 rare disorders in the database at the National Organization for Rare Disorders (yes HFI is included) or the rest of the over 7000 known rare disorders? I just don't think it is practical to expect the general public to know about all these things, and I don't think the tiny interest group for any one of such rare diseases is powerful enough to cause enough public awareness to change how the entire population of HFI people is managed. I do think there is some public sympathy for rare and fatal diseases of childhood but since HFI is easily managed with diet (once diagnosed) then I just think most people are going to think, "Oh, well, I don't need to worry about it then."

I do agree, I completely agree, that physicians should be more aware of HFI, especially people like allergists, gastroenterologists, ER doctors, and hepatologists. If a child goes into an allergist's office beacuse he vomited when he ate bananas and his mom thinks he's allergic, and his office testing is negative, his allergist should be able to say, "I don't think he's allergic to bananas but there's this other condition he might have so I'm going to send you to Doctor X who can test for that." Nutritionists and dietitians should also know about HFI. In fact, for a condition like HFI where the management is PRIMARILY nutritional, it should be one of the conditions explicitly covered in detail in their training curricula.

I also think there should be a formal medical position on how schools should manage kids with HFI, eg not forcing them to eat unsafe foods, not penalising them for failing to eat fruits and veggies, etc. Some of the stories posted on here about kids with HFI at school are really sad and if there were a formal position from the appropriate doctor's organisation then I don't think this would happen. Kids with allergies already have many concessions made and HFI should get similar concessions since there is already a structure in place for that.

So, it is not that I am against trying to find a way to change how kids with HFI are managed. I just think that when you have a very rare disease, you need to really focus your efforts on the people who can make the most change with the least amount of investment and who are the most relevant to your disease.

I think personally, that it would be useful if we could find out how children with failure to thrive (FTT) are managed medically. There ought to be some specific place where HFI is considered in there. There is probably a differential diagnosis but I don't know anything about it. If someone here is friends with a doctor who is familiar with HFI then maybe they would be willing to answer some questions if we could put together a list.

Another possibility is to see whether there is a charity group that is all about metabolic disorders that can be an umbrella for this type of work, and give advice and legitimacy to any efforts to ask official bodies to change how they deal with HFI. for example www.rarediseases.org

[charlie]

I think there is much more awareness of HFI now, look how many recently have joined saying their doctor has suggested it as a diagnosis, so it is getting out there, maybe as you say promote more to the medic boards like this. The more links we get to this board from other sources the better.

But we must also be sensible about the advise we put out there. We cannot dictate, just advise strongly.

[ukbill]

Back to convention..

Today I met with Sharon and family!

Young Bill, yes a second HFI person in the UK called Bill! And also the only other person confirmed HFI I have ever (knowingly) met..what chance of that??

What a great family we had a great meal in a local Pub and I acted as official gravy taster for young Bill to make sure it was safe for him to eat. and it was

There is also at least one more HFI'er in the Birmingham area of the UK, Sharron's Mum who at 77 must now be considered the oldest living HFI we know about, unless Fred has been lieing about his age??

So maybe a xmas meeting rather than a convention in the UK is in the offing

Anyone else want to meet up for a xmas meal in the Birmingham area of the UK?

[shan]

Lovely meeting you lot too.

Not only did you and mini Bill get to meet, it meant I got to meet your mom and daughter which equates to all my experiences rolled into one! Just too much to talk about and we barely scratched the surface but it underlines how useful a convention of some kind would be.

Round 2 soon!

[charlie]

Did I hear a universal groan ....................... Oh no, not another Bill......................... Only kidding.................

Glad you got a chance to meet up, yes, a meeting would be lovely especially for Megs to meet another child, although we may be heading for a new diagnosis to still meet kids that have to restrict their diets would be good, and for mini Bill too.

Lets make plans, mind you got four puppies to factor in the equation re dates as only 5 days old at the moment. Pictures can be viewed on the www.fructosemalabsorb.proboards.com in miscellaneous section as still cannot set up to post them on this site.

Very cute, terrible time wasters, and Meg very proud of them as they are her dogs. Mind you I did accidently tell one of my clients "great news Megan is expecting" and wondered why she was looking at me very strangely.......................... oops, I meant Millie.

[charlie]

I don't know Fred, tried every which way. On the FM board Attachments come up as an option when you use the reply page, but not on this. Colormist tried to explain a way of doing it but not quite set that up yet, maybe have another go soon.

Maybe its just my computer............. can't see your picture.................... so still don't know what your favourite food. which by the way is a very tense subject here at home. Meg struggles with her school work and homework is stressfullllllllllllllllllllllllllll...................... they had to write about their favourite food this week. OMG.................... half hour rant about what to choose, why did they choose food, what a silly subject etc etc etc. Eventually got her to write two sentences about blancmange.......................... And that isn't even her favourite.

Anyway, back to original topic, looks like you guys can have your own convention in Canada soon...........................

[colormist]

Meg should have wrote about why the assignment to write about her favorite food was difficult. Sounds like she could have easily wrote about that!

And because I can:

My Favorite Food by Laura M.

I hate food. The food I really want to eat, I can't eat. The food that everyone implies I'm supposed to love, I hate. The food I'm told by professionals to eat to be healthy actually makes me very, very sick. I hate this assignment. You should have given the class a choice of two topics to write about. I'd rather write about my favorite animal, the cheetah. They're fast, beautiful, and nobody tells them what to eat. And if some Mr. Smartiepants did come along and tell the cheetah what to eat, they'd probably have Mr. Smartiepants for dinner.

The end.

[lucky]

OMG,

Colormist, this is the funniest thing I've read in a long time. I'm showing this to our 11yr old son. He's gonna LOVE it!!!

Every so often good humor like this really helps with the younger ones... Can't wait for an assignment like this to come our way now!!

Thanks

[Tammy]

Fred, I can see it. So it's not your end. hehehe
Laura, you always make me laugh. Thanks for lightening up the board!

[charlie]

Fred LOL, can see it now................................ Looks like macaroni cheese? With Lettuce? your earlier post seems to have disappeared so prob doesn't make quite so much sense to everyone else.

Laura, fabulous post, read it out to Megs, who enjoyed it too. Funnily enough today.......... she had to describe her favourite animal.............................. and they helped her to choose one of the new puppies to write about.............. Done.................... phew................... So luckily she won't be tempted to cut and paste yours...........................

Right, going to crack this posting of pictures shortly ................................

[ukbill]

Fred is like the will'o the wisp!

Now you see him now you don't!

Where has that delectable picture of Mac & Cheese gone?

[charlie]

That's enough of puppies, have removed the huge picture and will stop polluting this thread

Back to the subject. We could have an HFI party at my place and you get a puppy bag as you leave......................