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Post by sarosh on Dec 23, 2009 9:14:46 GMT -5
Hello,
I am a new member. I know I am HFI and I don't care how many doctors tell me it's all in my head ! I haven't got myself tested but do plan to send my blood to Dr.Tolan's lab. I live in Dubai and I have yet to meet someone who is HFI - It's great to see so many of you trying to deal positively with the condition.
I discovered that I wasn't a freak by reading an article in Reader's Digest ( which was my father's favourite magazine). The article was entitled " The Man Who Hated Sweets". This was when I was 30 yrs old but then we didn't have the internet and I suffered with hypoglycemia until i discovered on one of the sites that I could take glucose.
We all try to cope with the condition but what is appalling is the ignorance of the rest of the world - particularly the medical world!
Last year, I had my ENT doctor insist that I have orange juice after I repeatedly told him that I was intolerant to fructose!
My thoughts at the moment are about educating the world about our condition - I don't know if this is already happening, if it is please let me know , if it isn't then let's all think of a way of doing it.
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Post by Kelly Grace on Dec 23, 2009 10:19:27 GMT -5
Hello and welcome to our discussion board. My husband, Chuck, created the board when our 3 month old daughter was diagnosed with HFI.
We live in the Cleveland, Ohio area and Dr. Krishnan at the Cleveland Clinic saved our daughter's life. He led us to Dr. Tolan and a correct diagnosis.
Our daughter is checked every year twice a year, and is doing great. At our last appointment this summer Dr. Krishnan mentioned a woman in India that he believed to be suffering from HFI. I'm wondering if this is you.
In any event welcome to the discussion board. I can not tell you have invaluable these people have been to help my daughter live a normal life. The information that I have received here has helped so much. We hope that you find answers and ways to help you in your daily life.
Best of luck!
Kelly Grace
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Post by sarosh on Dec 23, 2009 10:57:23 GMT -5
Dear Kelly,
Thank you very much for the quick reply. I wish your daughter a very healthy life. You and your husband have done the world a favour by starting this forum - it can be very lonely out there with no one to understand your condition and to be labeled a hypochondriac and many other things.
Could you please send me Dr. Krishnan's e mail so that I could communicate with him.
Best of luck,
Sarosh
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Post by julienc on Dec 23, 2009 13:36:24 GMT -5
Welcome!!! So glad you found this board. There is another member here who was self-diagnosed after reading that very same article in Reader's Digest. She and her sister both have the condition but didn't have any idea what it was called until seeing that article. Thank goodness we now have the internet!!
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Post by Kelly Grace on Dec 23, 2009 21:53:46 GMT -5
Hello Sarosh, my.clevelandclinic.org/staff_directory/physician_name_search.aspxThe above link will pull up Dr. Krishnan's information. He's a wonderful person and doctor. We all love him! He does deal only with children, but he's such a source of information, I'm confident that he could point you in the right direction. Best of luck and welcome to the board! Kelly Grace |
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Post by ukbill on Feb 20, 2010 12:39:10 GMT -5
Sarosh, Well its nice to know Fred and I are not the only long survivors of this condition..  Yes the medical profession can be so very pig headed at times! It is good the know that Kelly and Fred have managed to find a few open minds and helpful Medical professionals. I have seen a few Dieticians over the years and they have all been totally brainwashed into thinking eating Sugar, fruit and Vegetables is essential for basic life! They have been totally unable to help or be anything other than dangerous in their advice! I really fear the advice they would give to a worried parent of a possibly FHI child! This link is useful and gave me the first information on HFI or Primary Fructose Intolerance as its called in the UK, that I ever had. www.climb.org.uk/They cover all Metabolic problems so you have to dig to find the Primary Fructose Intolerance (HFI) information. I found this site 10 or more years ago when they were called RMTDC. MMMM... They seem to have recently changed the web site and now the searchable database of Metabolic conditions has gone..  They are Very helpful people and totally dedicated to helping parents of, in most cases, terminally ill children. Contacting them is a good idea if you are after help and advice. I have to add that similar to the foods database on the Boston web site, some of the foods in their list are not tolerable, to me anyway, as they are far too high in Fructose or give an identical reaction if eaten. I am currently working on a web site which will have a more accurate list of foods including variety, preparation and cooking methods, which are as important as to the actual food type, on occasion. I will announce it properly it when its up and ready. Keep smiling.. |
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Post by Deb Mc on Feb 23, 2010 14:24:16 GMT -5
Sarosh, You might want to contact Duke University about their fructose assay and its availability to you. Here's a link to their Glycogen Storage Disease Lab which provides test and shipping info. medgenetics.pediatrics.duke.edu/modules/div_medgen_labsvcs/index.php?id=24The HFI DNA testing currently available at Boston University is not conclusive according to Dr. Tolan. Only about 80% can be diagnosed via that method. When my family tested normal he recommended more "definitive" testing, the fructose assay referenced above, which has 100% accuracy. It measures the 3 liver enzymes needed for fructose metabolism and is diagnostic for fructose 1,6-biphosphate deficiency as well as Aldolase B deficiency. So the results will tell you how deficient you are in each of the enzymes, if at all, which in turn tells you how much fructose you can tolerate if any. I am missing Aldolase B and severely deficient in the other two enzymes, which might explain why I can not have any form or amount whatsoever of fructose or sorbitol or artificial sweeteners or sucrose and cognates thereof. For me, the real test was going totally fructose-free. Most of my symptoms resolved and those that remained were 80-85% better within weeks of achieving total fructose-free. Low fructose diets such as those shown on Boston University's website didn't work for me, kept me miserably symptomatic and seriously ill. I went ahead and had the liver biopsy for the fructose assay as a measure to protect myself against the ignorance and negligence of the medical community re HFI. Am glad I did. My older son is scheduled for his liver biopsy tomorrow. Good luck! Deb Mc |
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Post by sarosh on Feb 24, 2010 0:53:32 GMT -5
Thank you Deb. Will get in touch wiht Duke University.
Sarosh
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