My name is Tiffany and I'm joining FLF as a Program Coordinator - I'm so excited to be part of a team that works tirelessly to amplify the patient voice!
With that being said we are close to wrapping up our inaugural survey to understand the state of care for NAFLD/NASH as experienced by patients. It will establish a baseline to monitor year-to-year changes in disease management progress.
The patient community is very large, but a broad understanding of challenges you all face is lacking. There are 100 million people with liver disease and stories to tell but most are only recognized in the late stages. We believe that is wrong but a first step is to have the data. We don't have a national benchmark or tracking system to understand the problem broadly or to know if it is getting better or worse - this harms the patient.
This effort to document your experiences as patients is an effort to bring light to this dark place and we really do need your voice so please consider taking the survey. It takes about 10 minutes on average to complete.
I have taken the survey previously. As a result of finding the FLF during a web search in 2020. I was diagnosed with fatty liver disease in, I believe, 1986, as a result of an abnormal liver panel during a routine physical. Was referred to a gastroenterologist for biopsy. Referred to UCSF for consultation. Fatty liver disease confirmed. Told basically to go home and not worry about it. Fast forward 35 years to 2021. After being with Kaiser Permanente for 14 years, I found the FLF on the web. As KP would occasionally do a liver panel I decided to press them in 2021 for additional testing. Specifically a Fibroscan. The Fibroscan indicated NASH, but only Stage 0-Stage 1. Also, a kpa score of 2.7…..which the FLF advised me that score could only be for a healthy newborn infant, not possible for a 70 y.o. male with a fatty liver. My point is that when I took the survey the first time in 2020 I had not yet received from any provider that I was a NASH patient, despite elevated/ abnormal liver panel numbers for decades. I did not today take the survey again per your instructions. However, today some of my answers would be different, because of the relatively recent NASH diagnosis. I question the diagnosis because of what I have learned subsequently from the FLF. If anything I may be at least a Stage II, or III NASH patient. KP plans no further testing for me at this time. They have told me they will only refer me for a first time ever visit with a Hepatologist if and when my condition becomes critical.
I apologize for the length of this message. Feel free to share my message with anyone you might wish to. Anyone’s thoughts or comments are always appreciated.
Do not worry about the length of your message - your story is important and we thank you for being open and sharing. Unfortunately, many others may have similar stories. We are hopeful that the results from this survey can be used to make a difference in how we view, diagnose, and treat NAFLD/NASH patients because clearly something needs to change.
It's great to see that you are active in this forum and thank you for taking surveys in the past! I did want to note that the survey we're running right now has been active for a few months, so the survey you took in 2020 is most likely a different one. We invite you to take this survey if you have the time - it should only take about 10 minutes.
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