Welcome! Please Introduce Yourself.
Welcome to our community! We’d love to learn a little about what has brought you here.
Hey! Recently diagnosed Stage 4 Cirrhosis, caused by having undiagnosed NASH for a lot of years. Still trying to figure out how to slow down the progression of the disease. Also how to deal with those comments like "You don't look sick" or " Just detox and your liver will be just like new!"
Tinathere are some lifestyle habits that can help manage and improve NASH in some cases https://nashdisease.net/lifestyle-habits. The comments from those that don’t understand can be frustrating and hurtful, our community understands. It can be exhausting to try and explain why you “don’t look sick” or why you can’t just do a liver detox. If there are family members or friends that you’d like to have a better understanding, sharing this information may be helpful https://nashdisease.net/clinical/understanding-liver-cirrhosis. You’re not alone. Please reach out anytime. All my best, Julie (team member)
Hello everyone. My name is Kevin, 40 year old father of 2 who has been dealing with Fatty Liver as well as Diabetes and Ulcers for around 15 years. I just found out I am now showing signs of moderate cirohsis and also dealing with chronic bowel distension, low platelets. My doctors have me on Monjaro, Metformin, Lisiniprol and advised me to do the Mediteranian diet , increase water intake and lose 50+lbs. I am 5 foot 4 and 271 lbs.
Hi Kevin! We’re glad you’re part of our community. Please let us know if there is anything we can assist with, we’re here to support you. Best wishes, Julie (team member) Thank you maam
What brought me here is the inaccuracies in your article and basically all your information regarding "NASH". I'm not sure how up to date you are but I would encourage your readers to examine the link to the updated article giving accurate and timely information:
https://cmsa.org/the-rebranding-of-nafld-and-nash-as-masld-and-mash/
There is no such medical condition as NASH or NAFLD any longer. The names and information have been rebranded and updated to reflect more recent studies and the experiences of gastroenterologist and hepatologists. I hope in the future, in the interest of providing expert and accurate education for your readers, you make certain your articles are being written by those who are knowledgeable and up to date with their information.
Steve Cripe RN (ret.)welcome to our community, and thank you for sharing so openly! The Health Union community encourages open discussion and we want you to be confident in the information you find on our site. A majority of our articles are written by patient advocates that have the condition, and share their own personal experiences. Everyone’s experience is unique! The informational articles written by the editorial team are periodically reviewed and updated by our medical review board. You can always find a list of references at the bottom of the articles to verify the information as well. Research into these conditions is constantly evolving, and we appreciate you bringing up some of the most recent changes! I will pass your feedback along. Thank you again and I look forward to seeing you around the community. All my best, Julie (team member)
Well Julie, it's all well and good to say that a majority of your articles are written by patient advocates who have the condition. But if they're not discussing their medical condition in terms of what is happening today regarding research, treatment, and currently accepted stages of the disease process, then they need to be educated and brought up to date by your medical review board and experts. "Everyone's experience is different" is true of any medical condition. But I'm not talking about people's experience. When patients are looking for information on a disease, they want the latest information. The articles on your website I've read do not reflect that, especially if you're not referring to the medical conditions accurately. And if your references that go with each article are not addressing sources that re-direct people to the latest, then are you really educating? Changing the name of your organization would be a good start and would say to patients, families and caregivers, "this resource has credibility". I'm not sure how long your organization has been around, but appearance wise, you need to bring everything and everyone into today. Either that or, since things are constantly changing, from research results to treatments to patient's experiences, you could take a more "general approach" and have your organization take a general "medical conditions of the liver" approach. If you want to be an authority on these conditions that effect the liver, I believe you need to educate and discuss the conditions in terms of what is happening today and where things are going in the future. In looking at the name of your organization, it would not be one I would consult to get the latest, accurate information. But this is just my experience with not only this disease process and condition, but medicine in general over the last 30 years.
Thank you for your time,
Steve Cripe RN (ret.)
Vivian from Nashville TN. Diagnosed with Fatty Liver disease in June of last year thanks to a vigilant nurse practitioner who saw concerning elevated numbers in routine blood work and sent me to a hepatologist. I've been so careful ever since to follow his recommendations. Catching it early is crucial since there were NO symptoms. I've lost weight, changed my diet, given up alcohol, given up sugar, salt, and white rice and potatoes. It's a struggle every day, but a friend had to have a liver transplant last year, and I saw how awful that was. I definitely don't want to go through that.
