I do a lot of volunteer work with the American Liver Foundation. This frequently puts me in social settings at food & drink events where, upon hearing the name of the organization, I’m immediately confronted with the biggest stigma of Liver Disease. “Isn’t it a little odd to be talking about liver disease while holding a beer?”
I love these conversations, because the juxtaposition creates a teachable moment that is more likely than not to be remembered.
My response blows up their preconceptions. “Actually, there are over one-hundred types of liver disease that have nothing to do with alcohol. NASH is a serious progressive liver disease affecting over twenty million American’s alone”.
One of the questions I see asked all of the time is what kind of testing is the best to determine if someone has NASH. I’ve written about the challenge of diagnosis before, but there are a lot of scared individuals out there trying to get answers from their under-educated primary case physicians, and everyone wants to skip the preliminary steps and go straight to a definitive diagnosis. If only it were that easy!
For the 2nd International NASH Day yesterday I took part in a webinar along with Dr. Tuan Pham of the University of Utah. Dr. Pham gave a great overview of the latest in the NASH space and I shared the story of my mom to provide an advocate perspective.
I recently posted my American Liver Foundation Advocacy video where I told Mom’s tragic story. Along with myself, several other patients currently living with various stages of NASH plus several medical professionals took part in the advocacy campaign.
The videos are now all available on the ALF Youtube page. Below are the embedded Youtube Playlists. Watch and share!
For #NASHDAY I’m asking everyone I know to “Give It Up” for NASH Awareness. It could be sugar, coffee, alcohol, TV, politics…literally anything! Write about what you are giving up on the sign attached and share it all over social media next Wednesday June 12th to help spread the word.
And if you can take the $5 that would have gotten you a cup of coffee and instead donate it to the American Liver Foundation’s NASH Day page, you can help raise awareness, provide education and support, and help fund treatments for NASH patients in the future.
A few months ago I was honored to take part in an American Liver Foundation effort to educate and raise awareness for NASH. I travelled to University of San Diego’s Altman Clincial and Translational Research Institute where I recorded a video telling my mom’s story so that others could learn and benefit from our loss. I was joined by a panel of individuals currently living with various stages of NASH and a few distinquished medical experts in the field.
The videos are finally being released as part of our leadup to the 2nd International NASH Day on June 12th. You can watch the entire video below.
For #NASHDAY I’m asking everyone I know to “Give It Up” for NASH Awareness. It could be sugar, coffee, alcohol, TV…literally anything. Post about what you are giving up on social media to help spread the word. And if you can take the $5 that would have gotten you a cup of coffee and instead donate it to the American Liver Foundation’s NASH Day page, you can help raise awareness, provide education and support, and help fund treatments for NASH patients in the future.
https://alfmad.org/greaternewyork/support/#NASHday to donate.
I have a friend who once lost a whole bunch of weight by removing two simple things from his diet. Cheese and soda. This was well before the current Paleo diet craze, when sugary drink taxes weren’t even whispered in the most progressive of city councils. It was also well before I knew anything about the liver or the difference between sucrose and fructose in the sugar I consumed. His story always stuck with me, though I never realized why it had worked.
Ever since the untimely death of my mother from NASH, I have spent a lot of time learning about the underlying causes that likely led to her liver failure. Along the way, I had to reexamine a number of misconceptions and prejudicies I’ve had about health and eating. Whether from genetics or pure luck, I’ve been blessed all my life with never having to worry about weight or what I eat. I never put a lot of thought about what I was putting inside my body until i started to read research about how obesity and metabolic syndrome developed, and why we were suddenly facing a worsening crisis over the last 50 years.
What I’ve found has changed my entire view on food & health.
When my mom passed away at 62 years old six weeks after being diagnosed with a disease I’d never heard of before, it sent me searching for answers. NASH is still widely unknown and the etiology is not well understood. Yes, it is largely linked to obesity, but there are many other risk factors that seem to be playing a role. One such factor that I discovered last year was the link between hypothyroidism and NASH, which my mom had for decades.
Recently I have been working on some projects on how the liver works, and found myself intrigued when writing about the function of the gallbladder. For those that are unaware, its main function is storing bile to be used in the digestion of fats. As I wrote about it, alarm bells began ringing in my head. NASH is the end stage of fatty liver disease, caused by an excess buildup of fat in the liver.
Gallbladder surgery (known as cholecystectomy) is one of the most common surgical procedures in the world, with over 600,000 procedures performed annually in the USA. It is considered completely safe with no long-term negative effects. My mom had her gallbladder removed years ago after suffering gallstones, as is the standard medically recommended procedure. I wondered if there was any studies on possible links between it and NASH, and began searching.
2018 was a big year for those trying to raise awareness of NASH, as well as those developing treatments and diagnostic methods. The first International NASH Day was held, a day of action with events in over a dozen cities on four continents.
2019 is already looking to be a major year for progress in the fight against NASH. Recently, Goldman Sachs declared that 2019 will be “The Year of NASH” based on the fact that several BioTech companies are expected to release late-stage trial results of promising treatments.
Tonight I’m attending the ALF Honors Gala in my capacity as a Board Member and the chair of the Associate Board for the Greater New York Division. The Gala is an annual fundraiser that honors influential professionals, physicians, and business leaders in our community.
It also just happens to be Giving Tuesday! Here are some ways you can show your support:
Bid on one of our GNY Honors Gala auction items. With over 70 items to choose from, there is something for everyone! Click here to view all items.