Post by colormist on Aug 21, 2015 7:24:38 GMT -5
I've been harassing strangers on the internet again. I don't ever actually expect people to respond and I usually forget about asking the questions by the next day.
Recently, apparently, I contacted the GARD Information Center about HFI and whether it is possible prevent/limit the body from producing fructose naturally. This was a crazy specific response and they even rephrased my question, so I'm pretty sure this was an actual person emailing me (though they sound like a robot).
Their email is below:
Dear Ms. Mitter,
You recently contacted the Genetic and Rare Diseases (GARD) Information Center about hereditary fructose intolerance. You shared that you recently learned that the body produces fructose naturally. You are doing a good job avoiding fructose in your diet, but would like to know if there is any way to prevent or limit your body from producing fructose, or if it is unavoidable.
Thank you for contacting GARD. We have identified information resources that you might find helpful. If any of the links we have provided do not work, please copy and paste the entire address into your browser. If you have other technical difficulties with this e-mail, please contact GARDinfo@mail.nih.gov or 888-205-2311Call: 888-205-2311 for assistance.
While we have confirmed that fructose naturally occurs in the body (see MedlinePlus), we have been unable to (among the resources that are available to us) find any information that would address whether there is a way to reduce of prevent the body from producing fructose.
In cases like this, it is sometimes helpful to speak with someone who specializes in the subject. There are two routes you could follow here:
You could contact a researcher who specializes in the metabolism of fructose; or
You could contact someone who works on the clinical side of things.
On the science side of things, you may wish to contact the researchers behind the HFI Laboratory at Boston University. Information and contact for the Tolan Laboratory at Boston University follows. The Information Center provides the names of researchers for informational purposes only and not as an endorsement of services.
Tolan Lab at Boston University which studies HFI and fructose metabolism :
www.bu.edu/aldolase/HFI/
www.bu.edu/aldolase/lab/home%20page.html
www.bu.edu/aldolase/lab/contact.html
On the more clinical side, you have the following two organizations which can help you locate providers locally.
Genetic Metabolic Dietitians International
P.O. Box 1462
Hillsborough, NC 27278
Email: info@gmdi.org
Website: www.gmdi.org/
Metabolic Dietitians in the United States
Academy of Nutrition and Dietetics
120 South Riverside Plaza, Suite 2000
Chicago, Illinois 60606-6995
Consumer nutrition information and referrals
Toll-free: 1-800-877-1600Call: 1-800-877-1600
Phone: 312-899-0040Call: 312-899-0040
Email: knowledge@eatright.org
Public Web site: www.eatright.org/
Find an Expert
We have recently-updated information about HFI on the following page. Use the left menu to view all of the resources we have available for this condition.
rarediseases.info.nih.gov/gard/6622/hereditary-fructose-intolerance/resources/1
We hope this information is helpful. We suggest you regularly revisit the Web sites for new information that may become available in the future. We strongly recommend you discuss this information with a medical professional. If you have more questions, we would be happy to answer them. The GARD Information Center can direct you to resources that provide disease information, research studies, clinical trials, patient advocacy organizations (supportive resources), medical journal articles, and genetic services.
Warm regards,
Lois Rednal
Information Specialist
The Genetic and Rare Diseases (GARD) Information Center is a program of the National Center for Advancing Translational Sciences (NCATS) and funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). The GARD Information Center provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish. Information Specialists are available by phone Monday through Friday, 12:00 p.m. to 6:00 p.m. Eastern time (excluding Federal holidays).
PO Box 8126
Gaithersburg, MD 20898-8126
Toll-free: 1-888-205-2311Call: 1-888-205-2311
Telephone: 301-251-4925Call: 301-251-4925
TTY: 1-888-205-3223Call: 1-888-205-3223
Fax: 301-251-4911Call: 301-251-4911
E-mail: GARDinfo@nih.gov
Web site: rarediseases.info.nih.gov/GARD
Important Disclaimer:
The materials provided are for informational or educational purposes only and are not intended as a substitute for professional medical care, advice, diagnosis, or treatment. This material does not represent an endorsement of any specific tests or products by the National Center for Advancing Translational Sciences Office of Rare Diseases Research (NCATS-ORDR) or the National Human Genome Research Institute (NHGRI). We cannot guarantee the accuracy, completeness, timeliness, or usefulness of the opinions, advice, services, or other information. Moreover, we strongly recommend that you seek the advice of your health care provider with any questions regarding your medical care.
52771
Recently, apparently, I contacted the GARD Information Center about HFI and whether it is possible prevent/limit the body from producing fructose naturally. This was a crazy specific response and they even rephrased my question, so I'm pretty sure this was an actual person emailing me (though they sound like a robot).
Their email is below:
Dear Ms. Mitter,
You recently contacted the Genetic and Rare Diseases (GARD) Information Center about hereditary fructose intolerance. You shared that you recently learned that the body produces fructose naturally. You are doing a good job avoiding fructose in your diet, but would like to know if there is any way to prevent or limit your body from producing fructose, or if it is unavoidable.
Thank you for contacting GARD. We have identified information resources that you might find helpful. If any of the links we have provided do not work, please copy and paste the entire address into your browser. If you have other technical difficulties with this e-mail, please contact GARDinfo@mail.nih.gov or 888-205-2311Call: 888-205-2311 for assistance.
While we have confirmed that fructose naturally occurs in the body (see MedlinePlus), we have been unable to (among the resources that are available to us) find any information that would address whether there is a way to reduce of prevent the body from producing fructose.
In cases like this, it is sometimes helpful to speak with someone who specializes in the subject. There are two routes you could follow here:
You could contact a researcher who specializes in the metabolism of fructose; or
You could contact someone who works on the clinical side of things.
On the science side of things, you may wish to contact the researchers behind the HFI Laboratory at Boston University. Information and contact for the Tolan Laboratory at Boston University follows. The Information Center provides the names of researchers for informational purposes only and not as an endorsement of services.
Tolan Lab at Boston University which studies HFI and fructose metabolism :
www.bu.edu/aldolase/HFI/
www.bu.edu/aldolase/lab/home%20page.html
www.bu.edu/aldolase/lab/contact.html
On the more clinical side, you have the following two organizations which can help you locate providers locally.
Genetic Metabolic Dietitians International
P.O. Box 1462
Hillsborough, NC 27278
Email: info@gmdi.org
Website: www.gmdi.org/
Metabolic Dietitians in the United States
Academy of Nutrition and Dietetics
120 South Riverside Plaza, Suite 2000
Chicago, Illinois 60606-6995
Consumer nutrition information and referrals
Toll-free: 1-800-877-1600Call: 1-800-877-1600
Phone: 312-899-0040Call: 312-899-0040
Email: knowledge@eatright.org
Public Web site: www.eatright.org/
Find an Expert
We have recently-updated information about HFI on the following page. Use the left menu to view all of the resources we have available for this condition.
rarediseases.info.nih.gov/gard/6622/hereditary-fructose-intolerance/resources/1
We hope this information is helpful. We suggest you regularly revisit the Web sites for new information that may become available in the future. We strongly recommend you discuss this information with a medical professional. If you have more questions, we would be happy to answer them. The GARD Information Center can direct you to resources that provide disease information, research studies, clinical trials, patient advocacy organizations (supportive resources), medical journal articles, and genetic services.
Warm regards,
Lois Rednal
Information Specialist
The Genetic and Rare Diseases (GARD) Information Center is a program of the National Center for Advancing Translational Sciences (NCATS) and funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). The GARD Information Center provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish. Information Specialists are available by phone Monday through Friday, 12:00 p.m. to 6:00 p.m. Eastern time (excluding Federal holidays).
PO Box 8126
Gaithersburg, MD 20898-8126
Toll-free: 1-888-205-2311Call: 1-888-205-2311
Telephone: 301-251-4925Call: 301-251-4925
TTY: 1-888-205-3223Call: 1-888-205-3223
Fax: 301-251-4911Call: 301-251-4911
E-mail: GARDinfo@nih.gov
Web site: rarediseases.info.nih.gov/GARD
Important Disclaimer:
The materials provided are for informational or educational purposes only and are not intended as a substitute for professional medical care, advice, diagnosis, or treatment. This material does not represent an endorsement of any specific tests or products by the National Center for Advancing Translational Sciences Office of Rare Diseases Research (NCATS-ORDR) or the National Human Genome Research Institute (NHGRI). We cannot guarantee the accuracy, completeness, timeliness, or usefulness of the opinions, advice, services, or other information. Moreover, we strongly recommend that you seek the advice of your health care provider with any questions regarding your medical care.
52771
