RARE Global Advocacy Alliance Member Spotlight: Michelle Giannotto

Organization Name: Auto-Brewery Syndrome Information and Research, Inc.

Disease Affiliation: Auto-Brewery Syndrome

Organization Mission: Our mission is to educate people about ABS, and through our research provide a cure.

What led you to the rare disease community?

My husband was diagnosed and suffered with ABS for many years.  You can see our story here: https://www.lovewhatmatters.com/whats-going-on-the-nurse-said-everyone-is-freaking-out-his-blood-alcohol-level-is-so-high-hed-only-consumed-a-piece-of-chocolate-cake-auto-brewery-syndrome/

What do you think are the areas that are lacking in the community (specific to your org or in general)?
Many doctors are unaware that ABS exists and do not know that the body can convert carbohydrates to alcohol, so people are misdiagnosed.  Most people can have ABS anywhere from 5-20 years without a proper diagnosis.

What are some of the pain points?
People with ABS are arrested for DUI’s when they unknowingly have ABS.  Some are convicted and serve time in jail.  Many doctors, lawyers, and police are not aware of ABS.  Many doctors do not know how to recognize the signs of ABS, diagnose, test or treat ABS.  Many caretakers for people with ABS develop PTSD.  People with ABS have lost their jobs, their medical insurance and have been accused of being a closet alcoholic when in fact they have a medical condition.  Many people with ABS are dismissed as closet alcoholics.  See my husbands DUI story here – his ended on a good note:  https://www.rudnicklaw.com/blog/dwi-dropped-for-client-diagnosed-with-auto-brewery-syndrome/

What are your areas of expertise?
I am the Vice President of the non profit for ABS.  I was a full time caretaker and worked with a minimum of 5 doctors around the clock for  years while taking care of my husband.  I worked closely with Infectious Disease, Pulmonology, Gastroenterology, Endocrinology, Internal Medicine, Emergency Doctors, Neurologists, Cardiologists and Functional Medicine Doctors in multiple countries.  Due to ‘on the job’ training, the President of the non profit;  Barbara Cordell and I know more about ABS, the causes, testing and treating of it than most doctors.  See our website at www.autobrewery.info.

What is your hope for the future for rare diseases?
For ABS specifically, it is our mission to get more information out to the public and educate them about ABS.  We would also like to see the Federal Law changed for DUI’s to include ABS as a disease.  If someone has a first time stroke, diabetic episode or epilepsy behind the wheel of a car, they are treated as a person with a medical disease not a criminal.  With a first time episode of ABS/DUI, the person is treated as a criminal and needs to hire a defense attorney for tens of thousands of dollars to try to keep themselves out of jail.  This rare disease we are learning is not rare, it’s more rarely diagnosed.  Barbara Cordell published a first ever book on ABS called “My Gut Makes Alcohol – The science and stories of Auto-Brewery Syndrome ” and it can be purchased everywhere including Amazon.

Learn more about the Global Advocacy Alliance. If your organization is already a member of the Global Advocacy Alliance and would like to be considered for a spotlight in a Global Genes monthly newsletter, please fill out the Global Advocacy Alliance: Member Spotlight Form.