Is there a HFI convention or conference anywhere ?

[susan]

Has there ever been a gathering of HFI'ers anytime, any place, any where? Are there any national, regional, or local organizations of any sort, to promote awareness, education, or research?

How many babies have died because they can not tell their parents their food is making them ill? People probably thought is was SID's. At times, the psycho/emotional pain of growing up with HFI can be greater than the illness it self. The whole world revolves about birthday cakes and ice cream. Children need advocates and parents need education and alliances.

Imagine a convention where other children can meet other children with HFI. How healing and normalizing could that be for them? I am a mental health therapist. I am in my 50's and have never met another person with HFI.

Susan Walker

[esmee]

Hear! Hear! ;D

I think that would be a great idea...

It is just such a relief to know that you are not some crazy hypochondriac.

esmée

[charlie]

We had a British convention ......... Well, Bill met Megan ( I chaperoned!!!)

The problem is everyone is so spread out, but it would be good, someone brought this idea up a few years ago.

I agree with what you say for kids morale, Megs was so chuffed to share her food properly with someone....... even if she was shocked when he helped himself to onions!!!!! She still hasn't forgotten it.

we are lucky in the UK that although distances seem far away, compared to you guys over the pond its a stones throw.

[ukbill]

I paid for the onions (only a few scraps of them) on the trip back.. Glad to be alone in the car with the car fans on full blast.. they were not the only thing blasting

Funny I though it was Megan and your mum who chaperoned..

Because of the road system we have and the amount of traffic on the roads, it can take easily as much time (and money) for a diverse group to meet in the UK as in The USA where flights are so readily available and comparatively cheap.

If anyone wants to organise one in the USA I for one will try to make it over the water.

We are hoping to have another meet in the UK sometime in March / April this time with another HFi from the UK as well!

[Tammy]

It was talked about on here several times. Unfortunately no one has ever volunteered to pick the ball up and get it rolling. If someone did, Regina and I would make every attempt at being there.

We had lunch with Fred once. Very nice. Regina really enjoyed it. Although I think she talked about the dogs more than Fred. Sorry Fred. lol.

[susan]

I visit these sites inconsistently. Around year 2000, I found the Boston site. Living in the midwest, I could never find a doctor to help. I am getting more serious in advocating for myself and others. I recently sent my story to "The Doctor's" for consideration under "mystery illnesses". Hey, everyone, write to the program with your story. Perhaps with enough prompting, something might happen.

Yes we are '"far and few in between." It might make sense to have regional districts....or the like.

Has anyone ever made a roster? I am not interested in invading anyone's privacy or cyber stalking... but how do we get organized?

Frankly speaking...I am so "P-ssed" at all those doctors who did say I needed counseling. I was in my 20's. (So I became a therapist !) Then ... A doctor of internal medicine here in Fayetteville Arkansas said, "sometimes women are just extra sensitive." I was in my 30's. I wanted to slap that sexiest, paternalistic pig. Only recently has my own PCP accepted my conclusion that I have HFI.

Yes yes I know,,,,they are stuck in the midwest just like I am. Forgive them Susan.

But we could really die if some med tech hooked us up to the wrong IV drip ! It is my life (yours and others) in danger due to their ignorance ! I'm ready to write some letters to Dr. Oz...or something. Vent vent.

Susan in Cave Springs, Arkansas, USA

[esmee]

Susan--

I was under the impression that fructose is no longer used in IV in the US because doing so has killed about 20 people by accident. I think all IV are now glucose based in the US. Please correct me if I am wrong.

One of the main reasons I do want to get a proper diagnosis is prcisely so that I can take the results (assuming they are positive) to one doctor in particular who decided I was anorexic and referred me to a psychiatrist and to a former GI doc of mine who sent me home from the hospital to die about 7 years ago because none of the test he ran showed anything wrong with me. I could not eat anything when I entered the hospital and still could not eat anything a week later when he decided I had been there long enough. And there are few other good doctor who listen, but had absolutely no clue what the problem was whom I would really like to educate about all of the fructose related illnesses. An then there is my current doctor who agreed to order the test, but also ordered me to stop eating in his office when my blood sugar was dropping...

[sm]

I agree with Susan. We need to have some kind of committee which could convince the medical community to be aware of the problems of HFI people.

My latest mishap was two years ago. My rheumatologist found me deficient in Vitamin D ( the latest medical hero) and gave me a Calcitriol injection . I did ask the nurse ( mistake ! should have checked the ingredients myself) but he laughed at me and asked why a vitamin injection would contain fructose or sorbitol. The next day I took a flight to Cairo and as I reached the hotel I had severe hypoglycemia - shivering and almost losing consciousness, orderd some pasta and gulped it down but was sick all through the trip. The worst part was my legs were almost paralyzed and I could hardly walk. Back in Dubai, I was referred t neurologist who did all the painful tests but couldn't find anything. My physiotherapist couldn't understand why I had lumps under my skin in the thighs ( lactic acid). Chronic pain send me to a consulleor. Two years hence I still cannot exercise, have put on almost 20 kg , can barely walk for more than 5 minutes.
They diagnosed me wiht Fibromyalgia and put me on muscle relaxants and antidepressants.
It is only later much later that I checked the ingredients in Calcitriol injection . dailymed.nlm.nih.gov/dailymed/archives/fdaDrugInfo.cfm?archiveid=13176
Polysorbate 20! A compound of sorbitol!
I should have known better , but so should the nurse and doctor!!

[charlie]

Esmee,

for your own sanity don't get a diagnosis to prove a point to an old health professional, they won't be interested, they will argue every little point as they nowadays think everyone isgoing to sue.
Get a diagnosis for your own sake and move on, hopefully much healthier for it, I just hope its the diagnosis you want.

[colormist]

Esmee/Susan,
I did ask my geneticist (AFTER my HFI was confirmed) about fructose being in IVs. That was one of the primary reasons why I got a diagnosis. I'm terrified of hospitals (especially the food), but it's worse when you don't have control over what's going in your body via IV. My geneticist did research for me and said that they no longer put fructose in IVs, they were all glucose-based.

Of course, I don't expect that to stay the same from day to day, but it's a helpful reassurance. It's kind of like picking up your favorite food at the grocery. Yes, you expect it to not have fructose, but you want to check the label just to make sure because things change.

Sarosh! I didn't know you had HFI. I thought you were just an interested third party. I am definitely going to have to interview you for my blog, now.

I think the committee is a great idea. That was part of my idea with writing the HFI blog--to get information out there to people who might have the condition or to doctors who might have a patient with the condition. That's also why I'm doing interviews in my blog, to let others know that it's not just ME with the condition--that there are many, many, many more people out there all over the world.

[esmee]

Thank you, Charile. I was saying that with a bit of tongue n cheek, but tone never really comes across too well over the internet, lol...but it would be a secondary satisfaction for me. I am definitely pursuing an accurate diagnosis for myself first and foremost.

Sarosh--your story is extremely enlightening and very, very important for all of us with HFI to hear. I rarely go to the doctor, and even more rarely allow them to inject me with anything, but I will be so much more cautious in the future the issue should arise. this experience is another example of why an accurate diagnosis is so important. thank you for sharing and i am sorry to hear that you have suffered for so long from that one-time exposure.

[julienc]

I would love to have an HFI convention. I've always thought it would be fun to convene in Boston and convince Dr. Tolan to attend. I wish I had the time to organize it, but I would be there with bells on if someone took the initiative.

Through this board I've met two others with HFI. We are indeed quite spread apart. One visit was while I was out in CA, and another lovely woman with HFI comes to my town every now and again. We've met twice now, and it has been wonderful. It's in an amazing experience to share a meal with another person with HFI (other than my brother, lol). In both cases it was like meeting with family. Instant connection.

[susan]

I recently had two failed IVF's. My health is on my mind. I wrote the Boston Doctor asking him about new research. He gave a few names to look up. In this search I learned that people had died from the IV they were given, and, someone died from the "fructose test" as a diagnosis. (I always thought that test was an oxymoron.) I will refuse that test !. I know of the liver biopsy. Is there an accurate blood test? Who what when and where ....can I get that?

The Boston doctor really had nothing to offer other than names to look up. There are plenty of descriptions of HFI. Guess what ? I ALREADY KNOW THAT. The information is repetitive. I have not been able to find "up to date" longitudinal studies. I am dealing with infertility, pregnancy loss, high blood nitrogen levels, protein in urine and high cholesterol. I am convinced HFI is more complex than just the need to avoid certain foods.

About women's issues.....? I have only been able to find 2 paragraphs in a medical journal from 1989 about an HFI pregnant women who had lost one infant to "failure to thrive"...So the doctors suggested to not give sweet formula to the child with whom she was now pregnant. Dah !

Write the Dr. Oz show, or write "The Doctors" TV show..TELL YOUR STORY.

I looked at the Members list. There are email addresses. Is it possible to do mass emailings in order to keep in contact with people?

Susan...(again ranting and raving.)

[esmee]

Hi Susan,

Yes, there is a genetic test (blood sample) that you can get through Dr. Dean Tolan at Boston University. He charges $450 for it and, if you come back positive, will test other blood relatives for free (he has NIH sponsorship for this). Baylor in Texas also offers the test, but they charge $950 for the first person and $450 for all additional family members (however, they may be willing to bill insurance, while Dr. Tolan cannot do so). Dr. Tolan answered the phone himself when I called, the people at Baylor never returned my call. I do not have insurance, so I am going with Dr. Tolan. I get my blood drawn next week to send off to him, but he needs 4 samples before he can run the test. He told me it would probably 6 weeks or so before he had that many people lined up. But, if you jumped in, that would mean we only need 2 more people to ask for it. Here are all the links to his site:

www.bu.edu/aldolase/HFI/hfitest/hfitest.html

www.bu.edu/aldolase/HFI/hfitest/hfipatinfo.html

www.bu.edu/aldolase/HFI/hfiinfo/detail.html

www.bu.edu/aldolase/HFI/hfitest/research.html

www.bu.edu/aldolase/HFI/hfitest/hfigrant.html

I completely agree that there is more going on with this disorder than just not being able to eat fructose, and that we need to know a lot more about the long-term damage that results from continued ingestion of fructose by undiagnosed HFI-ers.

Deb McQueen (who has posted on this site in the past) and her sons who were all finally diagnosed with HFI had a serious connective tissues disorder know as Erhlers-Danlos Syndrome that completely disappeared following the cessation of fructose consumption. How many other bizarre illnesses are caused by fructose toxicity?

My main symptom has been severe and incapacitating low blood sugar episodes all my life, but I manage okay until after I adopted a vegetarian diet and my health gradually got worse and worse until I was forced to drop out of college and quit my job, and I have not been able to function normally or hold gainful employment since (that was almost 20 years ago). I basically feel like crap all the time.

No doctor has been able to figure out why I seem to react negatively to practically every food on the planet to one degree or other. The fructose that is present in most everything I eat would explain this perfectly.

If I do in fact have HFI, I need to know so I can decide how to proceed. I have been on a low fructose diet now for almost 2 weeks, and I am not getting any low blood sugar episode. But I am still eating some fructose (10 gms a day from veggies) which would not be good for me if I do have HFI even if I can sort of get away with it on a superficial level.

I have a very good friend who became very ill after a 3 year stint on a fruitarian diet about 25 years ago and he has never been the same since. He has eating an almost fructose-free diet of meat, olive oil and celery, which is all he can handle, but his body has continued to fall apart. He has a lot of the symptoms/similarities of other people with this disorder, so I am trying to convince him to get tested also.

[susan]

Tolan's states that his test is not diagnostic and requires interpretation by a physician." This is THE problem about living in the Midwest. I could take the test and still not find a doctor around here who would know anything. My PCP has just decided to "take my word" on the whole thing...not that she knows anything about HFI.

When I was looking for long term research, it took Tolan, 1 and 1/2 months to tell me he does not do long term nutritional research. With all due respect, what exactly does he do? Susan

[tikitavi]

I know exactly what you mean, Susan!

[julienc]

Susan, I wouldn't think there is much interpreting with Tolan's DNA test. Honestly, either they find the mutated genes or not. I would think your PCP could help facilitate getting the sample to Tolan ().

Regarding the limited research...this condition is so rare, there just aren't the research dollars out there to support it. So very few are affected. Plus, from the outsiders perspective, there is an "easy" way to fix it - don't eat fructose. There may be many other health issues related to HFI that are unknown due to the lack of research, but by experiences on this board, we have several members who are 60 years plus and older doing quite fine by "simply" avoiding fructose. Easier said than done, of course, but compared to many other debilitating genetic disorders, this one seems to be relatively easy to control through diet.

The best and most important thing we can do is get the word out. I was surprised that our pediatrician had not heard of HFI, since he seems to be so well read on most all topics. This condition is (as you mention) quite lethal if it goes undiagnosed for infants. Your suggestion of getting the word out is right on. Over the years I have written to the Oprah show and Dr. Oz, to no avail, but I should keep trying. Laura (colormist) has done an awesome job of getting word of this board out to places like Wikipedia. Anything we can do in this regard would help.

Jan 22, 2012 15:20:55 GMT -5 susan said:

Tolan's states that his test is not diagnostic and requires interpretation by a physician." This is THE problem about living in the Midwest. I could take the test and still not find a doctor around here who would know anything. My PCP has just decided to "take my word" on the whole thing...not that she knows anything about HFI.

When I was looking for long term research, it took Tolan, 1 and 1/2 months to tell me he does not do long term nutritional research. With all due respect, what exactly does he do? Susan

[esmee]

Hi Susan--

Dr. Tolan is a Geneticist, I believe. His lab has been sponsored by NIH for 25 years to research the genes that cause this disorder. There are many different mutations (I read 27, but not sure if that is accurate), and there are still more mutations that need to be identified and discovered.

You must have 2 genes to have the disorder, though it is quite possible that carriers with only 1 gene are also symptomatic to some extent (hypoglycemia for instance has been reported in the parents of people with this disorder).

They believe that 85% of all the mutations have been identified, but it is always possible that you are in the 15% category that has an unidentified gene. That is why he can say that it is 100% accurate or diagnostic. You can get a negative result and still have HFI if you have one of the remaining unidentified genes.

Nevertheless, it is the best place to start because it is far less invasive of a proceedure than a fructose tolerance test or a liver biopsy (both of which are 100% accurate, but are far riskier to ones health). Dr. Tolan does not actually expect your doctor to know anything about HFI, but (probably for legal reasons) he wants a doctor to order the test. I am sure that he will take the time to explain what HFI is if your doctor is interested.

I live in California, I have been to some excellent conventially-minded and alternatively-minded doctors (both here and in Massachusetts and North Carolina), including a highly recommended gastroenterologist, and none of them has ever mentioned HFI as a possibility (nor FM for that matter), so things are not much different on the East and West Coast than they are in the Midwest I am afraid. The only doctors who seem to know that this disorder even exists is pediatricians.

When I presented my current doctor with a list of 20 reasons why I think I may have HFI (including severe hypoglycemia) he order me to stop eating in his office (my blood sugar was falling) and all he said when I asked him what he thought about my list was "I think fruit is not good for you." DUH! OMG! Where do these doctors come from? I don't know, well, actually this guy is from the Midwest come to think of it, ha! ha!

If you want to pursue getting a diagnosis, you should definitely start with the genetic test. Several others on this forum have gone to a local geneticist in their area (colormist is one) and had the genticist order the test from Dr. Tolan. Maybe you could try that if you cannot get you regular phycisian to order it for you.

Esmée ♥

[susan]

-Locations-Conference-
I did a very fast review of the member list. Very fast...so if I left out someone, please forgive me.
A few people were willing to give their general location. Many were not. Australia and Britain could have their own conference if they sought each other out in their own respective countries. There were quit a few from Canada, as well.
In the USA, only 49 members were willing to give a general location. New members and women were more cautious and did not want to indicate a location. I can understand all that. So here is my list:

Alabama 1, Arizona 2, Arkansas 2, California 7, Connecticut 1, Florida 4, Georgia 3, Iowa 1,
Maine 1, Michigan 3, the "Midwest" 1, Minnesota 3, Missouri 1, New Hampshire 1, New York 2,
North Carolina 3, Ohio 1, Pennsylvania 2, South Carolina 1, Tenn 1, Texas 3, Washington 3, and
Wisconsin 2.

I encourage other people to give their "general location" so we could safely seek each other out.

There is another person listed as living in Arkansas but there was no email.
Susan

[sm]

Ok Susan I will get tested too- for the sake of my children and hopefully grandchildren.

For your list - I am Indian but live in Dubai ( United Arab Emirates)