I think you probably know that Madrigal is likely to have the first drug approved to treat NAFLD/NASH by the FDA. This is very big deal for a disease with no treatments and we have been working closely with them to make sure they consider the patient perspective.
Madrigal has asked me to find a few patients who are willing to talk with them about what the journey is like in real life. What was the path to diagnosis like? Many of us have had difficulty getting properly diagnosed. They would like to know more about that from a patient perspective. They would like to talk with people about what it is like to live day to day with the various symptoms of the disease. How does it affect the quality of our lives. How do different medical specialists deal with liver patients. I know many of you have stories about being managed poorly. What is it like socially? What kinds of stigma have you experienced. How do we live between doctor visits.
They are also interested in finding a couple of patients who would consider being part of a panel discussion at the big liver conference in November. I'll be attending as a panel participant but they hope to find some new voices as they have heard my story too many times.
I know these people well and this is a sincere effort to help the community and it will help them decide what to spend money on in the future to support patients. I really hope to find a few patients in this group to join me in telling our stories. If you are interested you can direct message me your contact information and we can see where this goes.
Thanks
Wayne
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nash2
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They are looking patient perspective. A couple of patients will likely be offered a chance to go to the convention but that will be limited. Send me your contact info and you can discuss it with them to get the full details.
I just found this group and think its doing a great job helping address NASH and related liver disease. I was initially diagnosed with NASH after having a cholecystectomy a number of years ago, then confirmed shortly afterwards by liver biopsy. Though I am not at all sure I would agree to taking more medications (working way off some) I can see how it may be very important. I’d be happy to share my perspective and of course learn from others, particularly people working on improving health, diet and weight.
I am just starting down the path as recently been told in August I have NAFLD. Bloodwork and then ultrasound confirmation. No differential from NASH or staging yet as GI appts are way out there. Also have diagnosed anxiety and irritable bowel syndrome. Let me know if I can help.
I appreciate your willingness to help but as you probably suspect, you are so early in your journey that you wouldn't be able to respond to the concerns they are exploring. The long delays with the medical system are certainly a problem. People here are pretty knowledgeable and the website has a lot of info that may help.
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Just have a fatty liver
Non-obese Fatty Liver
