One of my Fatty Liver Disease group members sadly shared that her good friend’s brother Dan had died from NASH last week. Dan did not find out he had the disease until he went to hospital in December after thinking he was experiencing a stroke. Once he got into hospital they discovered it was extremely advanced Fatty Liver Disease. Dan spent December – February in hospital with no hope of recovery. He died within 2 months of learning of the disease.
This chills me at a number of levels. Firstly….EVERYONE needs to have a yearly physical. I know there are a ton of people who hate going to the doctor, I am even one of them. BUT yearly you need to demand that you are given a blood test and that liver panel tests are done. IF you find this disease early YOU CAN REVERSE IT. Doctors DO not know why this disease progresses to the more serious level of NASH. So unless you are diagnosed early and you find the support you need to make changes to improve your health there is an unknown risk of this developing to a deadly diagnosis.
Even if you find out that you have NASH with Fibrosis finding a good support group can mean that you SLOW or stop the progression of the disease. I have a large number of members who are staying stable at a higher level of the disease by altering their lifestyle choices to prevent further damage to the liver.
Our Fatty Liver Group on Facebook was created in 2008. We have over 1200 members from all over the world and we are a very active supportive group. Please see some of the comments below for what people said when I asked what the Group means to them. I am sure you can relate to one or more of their stories if you have been told you have fatty liver disease.
To join the group https://www.facebook.com/groups/fattyliversupport/
Elisa Davis I love this group…you all have made a huge difference in my life since joining…i have more answers to my illness….the support is so wonderful
Mike Murray It’s so hard to talk to people about our fears, enzyme numbers, successes. Who knows what enzyme levels even mean? It’s meaningless to most people. I can’t imagine the past few months without the support I have from this group
Theresa Prebula I don’t feel as lonely and crazy about how feel with my liver disease.
Bill Pinson I wish I had checked on a group like this or had more information, I may have been able to keep from needing a Transplant, could still have my old job and my life would be as it was. I lost my retirement, nest egg and all savings along with material things I had accumulated to keep the family going.
Priscilla M Simoneaux I have enjoyed the fellowship with other people who understand what I’m going through bc they have the same disease that I do. I don’t have to make excuses or explain myself. I’ve enjoyed getting info and encouragement from others to help me with this and to stick to this new healthy lifestyle before it progresses. Mostly, the friendship from you Michelle Clermont and the info you’ve given with your work that your doing to take this to a national stage to get the world to notice what’s going on and to take this seriously. Not enough is being done to make the younger generation realize or understand what leads to this. I don’t feel alone or lonely bc I have this group and I know bc of you that there are others out there going thru the same thing I’m going thru.
Nancy Fowlkes I love being a part of this group. Sadly I didn’t know about it before all of this happened to me but I feel like I have learned a lot and hopefully I have helped others too. No one else knows quite how it feels unless you are going through it our helping someone else go through this. I don’t know if many people know this or not but this group knew about me way before I knew about you guys! Pam Qualls Maloley heard about my story through a good friend of mine and shared my journey with this group and some of you joined my prayer page and followed me. That meant a lot to me! Fortunately I made it! But I was in the same position her friends brother was in. It was too late for me to reverse it. You guys are great and I appreciate the friendships that I have made and this group helps keep me sane sometimes.
.Pam Qualls Maloley The friendships I have made in this group have become family, one even helping me out financially. No matter what the outcome of this disease for me, I will count it a blessing because of these people.
Linda D Roy I am new to this group but have learned so much. Group of loving people who understand because they are experiencing or have experienced similar things. Glad that I found this group and hope I can in some small way help someone or encourage someone else. One thing I can certainly do … Pray for everyone
Francine Irwin McGerty I know I haven’t been around on here a lot lately..but this group has changed.my life! You’re my family, you’re my friends and your the only support I have. Without this group I would have given up. And I can vent to anyone on here and no one judges me. You are all always here for me. Xoxoxox
Ganny Piro The people on here have made me believe that I am not crazy! My Doctors have not taken me seriously for years. I am now taking control of my life and my health. I will be eternally grateful for the support and information you have given me. Although we may live worlds apart you all feel like part of my family. Thank you!
Melissa Harbin Waid I felt alone & in the dark 4yrs ago when I was diagnosed. I was constantly reading and searching on the internet for answers to my questions..even though I have a fabulous hepotologist and supporting family I was afraid of dying. when you go in the hospital to get your gallbladder out and the surgeon tells you “you have cirrhosis ” that’s hard to swallow!
I am very thankful for this group & all of you..there are few that I have become very close with and have a personal relationship with & feel like I have known forever though i’ve never meet them in person.
Michelle Clermont, the founder of this group, I ‘ve said before to you that it saddens me that you found it from your daughter’s illness.. I applaud you for being the mother that you are and fighting for her. In the process we are benefiting from it..I thank you and I love you! We are here for each other whether it’s 2:00 in the am or 2:00 in the pm..that’s why I love this group.
Sara Skinner I was very scared and confused at first. I am only 30 and not a big drinker. Although the DR said it was Non-Alcoholic I only ever related liver disease to people who were considered heavy drinkers…and that is what most people think where they hear that I have liver disease. I don’t even argue with them. I know that people who really know me and care know that I am no alcoholic that drank my liver bad. This group gives me strength and courage to face the disease. It made me want to learn more about what is going on in my body and what can happen. I have learned of certain signs to look for to know what to ask my doctor about.
Gwen Davidson I didn’t think it was a big deal as I was told you have fatty liver. Lose weight exercise more. Nothing else. This group has made me realise it is a big deal and that I need to take control of my health I also now have a list of questions to ask my doctor when I see him on the 27th.
Belinda Anne Tamara Sydenham
I love this group. I have made so many special friends like Dalibor
to name a few I know there are others that has helped me as well and still are. for me I find I have trouble talking with people cause I am so shy and all so I always bottle things up inside of me. so when I found this group I thought why not join and since then I have been given words of encouragement and have learnt alot along the way in my healthy journey in trying to stay healthy. So I thank you to this group for everything!
It gave more insight in to what is happening inside my stomach. It gave me a hope that, yes, I’ve real friends who can understand my situation and propose possible solutions. It gave more knowledge about my situation and now I can ask the Dr more questions. Can take more informed decisions. It made lot of difference. My mother passed away almost 15 years back with Cirrhosis. Had this group existed that time and had I been part of it, it could have made a difference. This group means a lot to me. Thank you all for your support. And thank you Michelle, for creating this group and making me part of it.
When I was told I had NAFLD, I was also told that lots of adults have it and it’s nothing to worry about. So for a year, I took the advice and went on my merry way. When other health issues came up and I started looking for answers, I found this group. It has been encouraging, informative, at times heartbreaking, often funny…it is a safe place for me to learn how to cope and how to care for myself. In this group, I feel loved, accepted, understood, challenged to keep making the right choices…it feels like family, and I’m so very thankful for y’all!
Ruth Pinciotti Shegda
I have tons of health issues from having an undiagnosed autoimmune disease until my 40’s. When my doctor told me 4 years ago that i had a fatty liver – – and do not worry just lose weight, alot of people have it”..i believed him. In 2013 when i had my annual ultrasound for the liver he told me you have gallstones. I decided to research on my own and found this group. it saved me!!! I finally understood what was wrong and what proactive steps that I had to take to help it not progress further. So many people here including Michelle Clermont
, Melanie Melaine Smith Dalibor Smolík
to name a few have been so patient and kind in answering even the smallest question that I had. I also made amazing friends in several members.
Even though I’m 4 years post transplant, it was not until joining this and the Transplant Survivors and HE group, that I have become more aware of what happened to me. Although diagnosed with NASH in 2007, I personally had no idea of what lay ahead. I truly thought that having the varacies banded was my cure! Following my BIG HE coma in June 2009, my brother became quickly educated, but I did not really comprehend the seriousness of everything. I know some people figured I had just given up, as I found it difficulty to walk, eat, carry on a conversation and basically just live. I now recognize that the disease and particularly HE robbed me of almost two years of energy, cognitive reasoning and memories. Prior to my HE coma, resulting in two days on my bathroom floor, I didn’t have the where with all to do anything, but the most rudimentary research on NASH. In the past month, I have learned more, just by reading people’s comments and following links. I’m not sure if knowing would have made a difference in what was happening, but I don’t think I would have become so depressed thinking I wasn’t trying hard enough or that the confusion was permanent. Also, reading other people’s comments has triggered some memories, which I am thankful for. I am so happy that I stumbled upon this and the other groups. Perhaps, doctors should inform their patients of these groups, so that people can prepare themselves as best as possible, for what may lay ahead.
When I found out just a couple of weeks ago, I felt to overwhelmed and afraid. So I thought well lets just see if there is some one on FB. I found this group and I am so glad. It has helped me to know what to ask, what to look for in some signs. How to eat and most of all the great support from people. At one time we were strangers to one another and are now a family struggling through liver disease together.
Terri Stone Bordelon
I came here in April 2013 suggest by a friend. I was so alone, my family thought because I was trying to find information on the Internet I was adopting all my symptoms from that. Even my dr would tell me to stay off the Internet. Everyone was mad because I was researching every symptom I could think of, because my doctor told me absolutely nothing.
When I found this place and I got such warm greetings and most of all understanding, I cried like a baby. I kept on fighting and researching everything and learning from you guys. I got a diagnosis a couple of weeks later. This group has been a comfort zone and my strength! Thanks to everyone here! OXOXOXXO
In 2011 when I was diagnosed I was so lost. The docs told me what I had but they were so vague as to what to do. Lose weight and exercise. Ok. How do I do that? There was so much conflicting information on the internet and I felt utterly alone. I floundered around and didn’t get anywhere. My family didn’t understand. They still think I am just a hypochondriac. Maybe I am. But there is good reason to obssessively worry about one’s health when you have the possibility of a transplant at some point in your future hanging over your head. Finding this group more than a year ago literally saved me. Support, information, and friendship helped me develop a plan and gave me the motivation to stick with it. I honestly don’t want to think about where I would be today if it were not for this group. I love youMichelle Clermont
, and all the friends I have made here!
First and foremost, sadly I know I am one of many…too many. This group lends support to each member and education is added daily. This is a constantly evolving disease. Every day we learn something new it seems. Some days I am ok dealing with this and others get pretty down so its good to have a group to sound off in. Thank you!
I find this group very comforting. There is a great deal of support and patience with we newbies to the group. I feel that I can come here and not only learn but I could vent if I feel the need. It’s nice to “be around” people who don’t think that you’re being a whiner. And, I really do appreciate the knowledge that I’m finding. So many people aren’t getting information from their doctors. Sadly, I don’t think a lot of doctors are educated about NAFLD/NASH.