NASH: “If I can help even a few people it will all be worth it”
Published 1 Jun 2022 • By Berthe Nkok
In October 2014, Dave’s mother passed away after a very brief and completely unexpected battle with NASH. She had only been diagnosed 6 weeks prior to passing and like most people back then, he barely knew anything about the disease that took her.
After that, he looked for things to do to help others and started out volunteering with the great folks at the American Liver Foundation. A few years later, he launched his blog, NASH Aware, to help raise awareness and educate others.
Read his story below!
Hello Dave, thank you so much for accepting to share your story with us on Carenity.
First of all, could you tell us more about yourself?
I grew up in New Jersey and have lived in New York or New Jersey my entire life. My family are big beach people and so we spend week-ends at the Jersey Shore for most of the warmer months.
I have worked in financial markets for nearly twenty years, but have always been passionate about writing. I self-published my first novel, Impact Event, on Amazon. Now, with three kids, most of my free time is spent with them and on the passion projects I have for raising awareness of NASH.
Photo courtesy of Dave
In 2014, your mother was diagnosed with NASH. Could you tell us about the early manifestations of the disease? Were there any warning signs you observed?
There were hardly any warning signs at all, which is all too common with NASH. A few weeks before she fell greivously ill, we noticed some jaundice of her eyes, that was it. She spent some time getting tests and a liver biopsy, but before the results came back she had an episode of Hepatic Encheplotpathy, which was terrifying.
How did she experience the diagnosis? How was she managed? What were her treatments?
It wasn’t until after she was hospitalized that the diagnosis was made based on the liver biopsy: Late-stage NASH that had progressed to full cirrhosis. She needed a liver transplant to live.
The New York University Langone Hospital, in New York City, first attempted to lower the dangerous levels of toxic ammonia in her blood, which were leading to the Hepatic Encheplotpathy. After a few days, she was stable enough to talk and to understand what was happening. The medical staff made it clear her only treatment plan was to get a liver transplant.
How did your mother’s disease evolve?
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 really process that she was sick.
How did you experience this diagnosis, as a relative? Do you feel that you were well supported by the medical staff?
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.
The medical staff at NYU was amazing. They took great care in explaining everything to us, and later when Mom turned for the worse they were exceptional at providing support for us.
A few years later, you decided to launch your blog "NASH Aware". Why did you make this choice? What messages do you want to convey to your readers?
When going through the grieving process, I found that talking about Mom’s disease helped. Even though I couldn’t help my Mom, 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. Yet I wanted to do more. I’m a big tech geek and waste far too much time online on websites 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. Now I get dozens of hits every day from all over the globe… Last year, readers from 132 countries visited my blog.
What topics do you cover? What feedback do you get from your readers? What does it mean to you on a daily basis?
Obviously, I give details about NAFLD and NASH, treatments, diagnostic tools, etc. But there are a lot of places you can get that information. I wanted to make it more personal, so I also write about grief and my children (we found out my wife was pregnant with my oldest daughter just after Mom got sick).
I write about the tough choices we face with food, diet, and mental health. I haven’t been as active during the pandemic, but still get messages from readers all the time. Some of the best comments I’ve gotten talk about how my sharing has helped them deal with their own grief.
One of my most popular posts was actually only about NASH in a tertiary way. It focuses on the role sugar plays in metabolic health and liver disease, and is called “Our Sugar Addiction is Slowly Killing Us”. I find that when I include a lot of research and studies into my blog posts they get far more engagement.
Why did you decide to join the American Liver Foundation? What role do you play? What kind of actions does ALF carry out?
The American Liver Foundation is the oldest and largest non-profit dedicated to liver disease in the USA, and they are headquartered in New York City, so it was a natural way to reach out and try and get more involved. I started out helping them organize a young professionals group called The Associate Board of Young Professionals, which has been growing strong since 2019. It is an amazing group of people that have remained steadfast and dedicated even through the turmoil of the pandemic.
I then joined the Greater New York Board of Directors, which was the largest regional division in the nation. As a result of the pandemic’s impact on non-profit fund-raising, the ALF was recently reorganized and the regional divisions have been collapsed into a flat structure. I now serve on the National Board of Directors, where I continue to steer ALF advocacy towards NASH awareness, research, and treatments.
ALF’s mission is to promote education, advocacy, support services and research for the prevention, treatment and cure of liver disease.
What are your plans for the future?
As I embrace my new role on the National Board of Directors, I hope to help guide advocacy and research efforts towards raising awareness about NASH, diet, and general metabolic health.
Personally, I will look to (finally) finish the two works-in-progress I am writing, and spending as much time at the beach with my family as possible.
Finally, what advice would you give to Carenity members who, like you, have a loved one affected or are affected by NASH themselves?
Don’t despair! NASH is one of the few diseases that can be completely reversed if you catch it early enough. Our livers have amazing regenerative powers, and often just losing 5 to 10% of weight can be enough to completely reverse disease progression. Share your stories, and ask questions of each other. There are amazing communities like Carenity out there with people just like you willing to help.
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