Medical people understand FRUCTOSEMIA not HFI

[ukbill]

Over the years I have spoken to lots of Medical professionals (I meet plenty of them in my work).

I always raise the subject of HFI with them to increase the awareness of our condition within the medical profession on the whole.

As expected none of them have a clue about it.. however when I say it's also called FRUCTOSEMIA they all get instantly the point that the condition is potentially fatal and a serious one.

I think its the xxxxxSEMIA part of the word that means it's a serious condition.

Our condition is frequently (Constantly) confused with FM / Fructose Malabsorption when we call it HFI and an Intolerance is not usually a potentially dangerous condition.

To medical professionals having an "intolerance" to sugar is counter intuitive because sugar is a key part of the metabolism of all life on the planet, to them it's like saying we have an intolerance to oxygen or water.

So we do not get taken seriously we get put in the "fruitcake, hippy, homeopathic, new age" grouping and considered nutters to be ignored and moved on at speed to someone else to be their problem.

There are and will be always problems with Quack fake "medical Advice" web sites but changing what we call our condition to include Fructosemia along with HFI instead of just HFI when talking to medical Professionals should get you taken far more seriously and dealt with in a more professional way instead of getting the brush off or being treated like idiots as many people are experiencing today.

I have asked Fred who I think has contact details of the admin people for this site if we can have the name changed to be FRUCTOSEMIA / HFI-INFO Discussion Board to help spread the word.

Many medical professionals and medical researchers seem to visit our site looking for information perhaps to help with a diagnosis for a problematic client? anyway I feel including the name FRUCTOSEMIA would be a good move.

What are your thoughts / experiences?

Please add your thoughts experiences etc.. and please see if it works for you too, it cannot do any harm.

[colormist]

Hi Bill,

Might just be a US thing (who knows!) but my googling for Fructosemia is (about half the time) redirecting to Fructosuria--which is a harmless medical condition. In fact, a few times it has defined Fructosemia as "A rare harmless asymptomatic condition caused by a lack of the..." (http://www.rightdiagnosis.com/medical/fructosemia.htm)

I'm wondering if we'll run into the same issue state-side with people confusing Fructosemia with Fructosuria. Again, one is harmless and one is life threatening. However, perhaps using both HFI and Fructosemia, we can double down on the correct terminology. I would hope people wouldn't confuse three different sugar conditions! (Fructosuria, HFI/Fructosemia, and Fructose Malabsorption)

In other news, (while googling Fructosemia), I came across this medical article which summarizes cases of HFI over the years! omim.org/entry/229600
I didn't see myself listed, but the cases are pretty interesting. Dr. Tolan is mentioned.

[ukbill]

I have tried all the email addresses for "Rightdiagnosis.com" and they are all fake or do not work in any event.

I have sent an email to "healthgrades" customer service telling them their Rightdiagnosis site is dangerously inaccurate.

Perhaps you could send one too? Try to get them to either remove the whole site or at least sort out the part we know to be so very wrong and dangerous?

Happy new year to you all by the way I hope you and family are healthy happy and finding 2017 less challenging than previous years have been?