Today I had the pleasure of meeting a fantastic group of medical professionals that are all working hard on solving the NASH pandemic as part of International NASH Day’s worldwide efforts to fight the disease. I’ll be blogging much more about what I learned and hopefully will be able to follow up with some interesting pieces from some of the great people I met today.
Below are the prepared remarks for this speech…you can also click here to view the livestream.
Thank you to Montefiore and the Bronx Health Link for organizing this fantastic event, and especially to the NASH Education Program for helping launch the 1st ever International NASH Day.
My name is David Frank and I don’t have any of the sterling medical credentials or backgrounds in healthcare that my fellow speakers on stage here can boast of. What I do have is a very personal connection to NASH and a drive to take action to help raise awareness of the deadly disease.
In October 2014 my mother Geraldine passed away after a very brief and completely unexpected battle with late-stage NASH. She was only 62 years old, and had only been diagnosed with NASH six weeks prior to passing. Like most people, my family and I had never even heard of the disease that took her from us. She was a gregarious woman, a prolific cook who was known as the matriarch of our extended family. She constantly struggled with weight after having her three kids, and became heavier in her later years, but was never what any of us considered to be THAT overweight. Sure, she had minor health concerns as most 62 year olds do, but we never were aware of anything wrong with her liver. Until, as many similar stories about NASH go, it was too late.
A few weeks before her diagnosis we noticed the only symptom we ever saw; a slight yellowing in her eyes. She went to a doctor and was checked into a hospital for some tests, which included a liver biopsy. While waiting for the results of the biopsy, she was discharged and returned home. My family was concerned but optimistic based on the lack of other symptoms. Of course I now know that simply being overweight is one of the most crucial indicators of NASH.
A few days later I received a frantic call in the early hours of the morning from my Dad. Something was wrong with Mom. Luckily I was only a few blocks away and raced over to find her in a dazed and confused state, aimlessly walking in circles and incoherent, a condition I later learned was due to her liver failing and not being able to cleanse dangerous toxins from her blood. She was rushed to a local hospital, where the initial diagnosis was not good. The liver biopsy returned later that night and confirmed the initial suspicions…Mom had late stage NASH that had progressed to severe Cirrhosis. She needed a liver transplant to live.
During the next six frantic weeks, my family did as we always do and pulled out all of the stops to do anything that we possibly could to help Mom. We worked with the amazing team of specialists at the NYU Langone Liver Transplant Center and got Mom stabilized, and began a plan of treatment to get her healthy enough for consideration for a transplant. We worked with a nutritionist to design a new diet. We arranged for nearly round-the-clock visits from family members and planned out her return home. My sister undertook preparations to literally save Mom with a living donor transplant. All of it was to no avail, and she passed away before any of us could even process that she was sick.
For a long time afterwards I struggled with grief, guilt, and a complete feeling of helplessness. I’m the kind of person that takes action, fixes things, and finds a solution. I don’t take no for an answer. For really the first time in my adult life I’d faced a situation where there was absolutely nothing I could do to help Mom.
And so I started looking for things to do to help others. I researched NASH and other liver diseases and learned as much as I could. I found out that over 90 million American’s are afflicted with Non-alcoholic Fatty Liver Disease, and that more than a third of them may already have progressed to NASH without even knowing it. I read about NASH becoming the leading cause for adults being placed on liver transplant lists, surpassing Hepatitis C. I discovered that globally nearly a quarter of the entire population of the planet likely has NAFLD.
I ultimately decided that I couldn’t merely read and learn about the disease that took my mom; I had to DO something. I started out volunteering with the great folks at the American Liver Foundation, and ended up chairing their new Young Professionals Committee in New York. We’ve done some great things together and more are sure to come. Yet I wanted to do more. I’m a big tech geek and waste far too much time online on website and blogs, and so I decided to use some of that energy for good. So I founded nashaware.com to help raise awareness and educate others. If I can help even a few people it will all be worth it. But I want to do much more.
The problem is that Liver Disease has never been a “sexy” cause. It doesn’t get pink campaign deals with the NFL or have movies made about it. And yet unlike cancer or AIDS every single person is a potential victim with a disease like NASH. You don’t need a genetic predisposition or family history. You don’t need to have a “risky” lifestyle. You just need to be overweight for a period of time. It’s a preventable health crisis that may soon compete with Cancer and Heart Disease as the leading causes of death for Americans, and yet doesn’t get more than a blip in the press. Much of this is due to the fact that liver disease is still strongly associated with the stigma of alcohol use. Even friends and family that we have explained Mom’s disease to many times over still can’t quite grasp that she was not an alcoholic. Hopefully things like International NASH Day can start to make a dent in this information void.
We’ve known about the rising rates of obesity in western society for nearly my entire life. The World Health Organization declared an Obesity epidemic in 1997, over twenty years ago. And the numbers continue to grow at disturbing rates. A few weeks ago at the European Congress on Obesity, researches presented staggering projections that over half of all Americans will be obese by 2045. Yet today, western culture is more concerned with promoting the acceptance of individual body appearances than dealing with the hard medical realities of the risks that come from simply being overweight. While these goals are worthy as far as mental health is concerned, they are self-destructive to the reality of body health.
NASH is known as a silent killer because of situations just like my Mom’s, but we need to change that through earlier diagnosis and treatment. And that all starts with medical professionals like yourselves. Yet even in the medical community awareness of the severity of NASH is far too low. A March 2016 Deerfield survey found that almost half of doctors surveyed were unaware of the clinical differences between NAFLD and NASH. An October 2017 survey by the Chronic Liver Disease Foundation found that 58% of medical doctors were unaware of specific NASH trials currently ongoing. We still have a long way to go.
My wife and I found out we were pregnant with our first child while Mom was in the hospital. I didn’t tell her until she was already comatose and we were desperately hoping she would fight through it. My daughter bears my mother’s middle name and having just turned 3 is very curious about her Grammy, whom she sees in all of these pictures, but will never meet. My sincere hope is that by the time she is a grown woman deaths from NASH will be an odd rarity rather than a steeply increasing pandemic, largely due to the efforts of medical professionals like yourselves.
So I want to personally thank you all for attending this important event, and hope that you will spread awareness and take steps with your practices to help combat the rising incidence of NASH. I can write a bunch of words on the internet, but you will be the ones that save people like my Mom in the future.