Area of high numbers of HFI

[dr]

Hi everyone, this is my first post, so hello to everyone.
My query is does anyone know of an geographical area where HFI is more concentrated?
As the mutation is fairly rare, it's not unlikely that a few of us are distantly related. I would love to know if there is a region that has a disproportionate number of HFI individuals, indicating that is where one of the original HFI mutations first occurred.
Love to hear your thoughts.
Deb

[rysmom14]

for what its worth, My husband and I only share a polish background. none of the other nationalities are the same.

[ukbill]

I have heard of a couple of small towns in the centeral area of America where there are a cluster where most people have HFI or a simalar condition.

Also in Wales, there is one village where a lot of HFI'ers live.

According to something I read a long time ago (if my memory is not playing tricks) It was postulated that some of the genes became esatablished in a group of nomadic horse people??

Most likly East European or high latitudes of Siberia or even Mongolia??

These are areas where the Nomadic peoples haved lived the longest and who have a limited diet of root vegetables / fruit neccasery to allow us to grow to maturity and breed sucessfully.

[colormist]

I thought I read somewhere that it was more prevalent in regions close to the arctic circle? Norway, Sweden, Finland, UK, Iceland, Greenland, etc. I had the deepest impression that my ancestors mostly ate seal and whale... but my memory is fairly unreliable and prone to elaborate fantasy.

[AgataD]

I am first generation Southern Italian. My parents are both from small towns in the Naples Italy area. We move to Trenton Nj, in 1976, where I was born. I know there was a study I saw vine out of the university of Naples. Anyone else here of southern Italian decent?

[rysmom14]

Hi AgataD,

I am half Italian and we are Sicilian.

[oneladyff]

I am of Norwegian descent and it’s my understanding more prevalent there but I have reached out to a couple of Drs there and have had no response. Has anyone talked to or heard from the Dr in Boston that is working on a cure for HFi

[Katie535]

My parents are both of German and Irish descent. Both sides of my family have roots in Pennsylvania (a state in the U.S.) around 150-200 years ago that I have recently realized, so maybe there was some distant overlap between my parent’s families from back then?

[ukbill]

Oct 30, 2019 6:46:24 GMT -5 oneladyff said:

I am of Norwegian descent and it’s my understanding more prevalent there but I have reached out to a couple of Drs there and have had no response. Has anyone talked to or heard from the Dr in Boston that is working on a cure for HFi

Do not hold your breath for that.

There are several issues with HFI that no magic pill can sort out.

if they can sort out the issues with the liver then there are also issues with the intestines.

1 lady in Germany went into hospital to have a standard medical procedure called a DNC she came out of hospital 6 months later having had a liver transplant!

The Sorbitol in the IV drugs destroyed her liver entirely.

So she had a fully working none HFI liver.. so she should be able to eat fructose right?? Wrong.

Her intestines objected most strongly and she was still totally unable to consume any sucrose or sorbitol.

Source of this information was Prof T Cox of Addenbrooks Hospital Cambridge UK. (the main source of reliable information on HFI google his back catalog)

He used this case and several others with less favorable outcomes to get Sorbitol removed form all IV meds in Germany and I think most of the EU.. however not entirely in the UK.

Take care and keep smiling

[rysmom14]

Hi Bill,

That is very interesting and terrible about the women and the liver transplant. I also thought that if the liver was transplanted then having HFI would go with it, but I guess because its a genetic condition, out genes are more than just in our liver Our best bet is accepting the condition and learning to live a wonderful and exciting life. If progress is made toward newer intervention, I believe that they would help to lessen some of the severity.