Hi Susan,

I give you these beneath 8 Centers studying the genetics of glucuronidation in humans:

1) National Institute on Drug Abuse, NIH

2) The General Clinical Research Center at San Francisco General Hospital 

3) Department of Preventive Medicine and Norris Comprehensive Cancer Center, Keck School of Medicine, University of Southern California, Los Angeles, California.

4) Cancer Research Center of Hawaii, University of Hawaii, Honolulu, Hawaii.

5) Department of Biochemistry, Molecular Biology, and Biophysics and Masonic Cancer Center, University of Minnesota, Minneapolis, Minnesota.

6) Department of Medicine, University of Chicago, Chicago, Illinois

7)Department of Human Genetics, University of Chicago, Chicago, Illinois

8) Pharmacogenomics Laboratory, Department of Veterinary Clinical Sciences, Washington State University College of Veterinary Medicine (Susan, don’t worry – they study genetics of glucuronidation in human patients)

Best wishes,

Ilya

Ilya,

Thanks so much!  I think I've waited more than a year for an answer to that question, but I am so grateful for this list of centers.  Do you study in this area yourself?  That certainly gives me a better place to get started.

My family has known problems on UGT1A genes and it has affected three generations, all alive at the same time.  I was one of the very rare people  who took chloramphenicol in 1967 and ended up in bone marrow failure and soon they took that drug off the market.. Chloramphenicol definitely stresses glucuronidation which is why it was associated with gray baby syndrome.. 

Mainly for my mother's sake, who is 92, I've been looking for a safer list of antibiotics to use for those with glucuronidation defects. Most info from manufacturers doesn't even mention Phase II areas.

Families such as mine need help in avoiding drugs that will have unanticipated effects.  Since I wrote this question here I have been assembling more families with problems in this area. ,We have already been able to share stories of how this has affected our encounters with various medications.  It is not just about cancer research or cancer meds!

Do you know if any of these centers offers genetic screenings for the UGT1A genes and how that might be arranged?  In the screening that my family received,, my rare snps were dropped from the test before my mother was screened, but she had rare snps I didn't have. We wonder if she has both.   She has had many more issues with medications causing unpredictable and very severe  problems. 

Again, many thanks.

Susan

Dear Susan,

I'd left glucuronization' research many years ago, but still try to follow major developments in that area.

As for your request, I do know that in your homecity of San Diego there is a-top-of-the-art Center (please find beneath), which should conduct all tests needed for your lovely mom and other members of your family.

MAILING ADDRESS

Pathway Genomics Corporation

4755 Nexus Center Drive

San Diego CA, 92121

CLIENT SERVICES DEPARTMENT

(858) 450-6600

(877) 505-7374

[email protected]

GENETIC COUNSELING DEPARTMENT

[email protected]

Besy wishes,

Ilya

Ilya,

I thought  it was likely that you had had a foot in that door!

Ah, thanks!  San Diego is where my oxalate project has its home and affiliation, but that is not where I live.  My home is Dallas.  People who work in our project live all over the world, and the families we work with are from all over the world. 

I have had two doctors in two different states after being shown my family's genetic testing  tell me  and I quote:  "Western Medicine does not do genetics." After that, I began to notice that  almost every doctor in about seven institutions where my mother has been trying to recuperate in two years has refused to consider genetic risks in their medication choices.  The only really helpful people have been the pharmacists, but my family, not the doctors, brought them in..  Doctors want a list of drugs to avoid that have already caused problems, but we've learned that  this list will not help them make  the next choice. These same doctors have also refused to consult with our family's geneticist.

So our experience within the medical system is why, Ilya, that I think working as individual families at different centers close to our homes might not help very much, although I would like to have a more thorough look at our UGT1A genes.

Susan

Ilya,  my mother has now been hospitalized with pneumonia, and as I knew would happen, her doctors want to be given a list of antibiotics that would be safe for her glucuronidation issues and for her mitochondrial function which by metabolic testing, is severely compromised already.  I don't know how to find or make that list, as last time she was given a list of antibiotics effective with a pathogen, when I looked up each antibiotic separately from a long, long list none were without problems listed in the literature on attacking mitochondrial function.  This is exactly why I asked this question more than a year ago.  I just want a list of safer antibiotic choices for those with glucuronidation defects especially knowing that I was put into  bone marrow failure from an antibiotic chosen for me when I was a child. 

I recently watched a lecture on line from a mitochondrial expert in drug toxicity who actually listed the antibiotic I took and another my mother had taken that also compromised her mitochondrial function about two years ago.  If you are interested in his lecture, it is available here: http://www.mitoaction.org/blog/mitochondrial-disease-and-toxins.

I have a long list of other families in the same boat.

thanks!

Susan