The Challenge of running a support group, restoring my passion

I left the Fatty Liver Disease Support Group I created 6 years ago on Monday after 2 senior administrators left and deleted me from their Facebook. I have known both for 3 or more years and i was friends with their family as well. I was told the drama in the group was my fault for not standing up for them clearly. That I am too lenient and I am too often allowing people to come to the right answers for themselves once they have been advised on things like not using supplements. That I am the reason for the dysfunction that happens in there

I want to be clear that I understand their viewpoint. When you are on the edge waiting for a transplant or you have had one there is a desperate need to demand that everyone else NEVER get to their stage of this disease. I agree completely with this, but my confidence has come from the fact that I am unaware of a single member who came in to the group with early stage fatty liver who has actually gotten worse with the advice given in here about eating natural foods and stopping the processed foods as much as possible. You are looking for a ratio of 90% natural and 10% processed.

I did a lot of soul searching on Monday and cried a ton of tears. I was blamed for drama on the weekend that i was not a part of, i did not witness but that i received 10 emails from angry members about how things happened with deletions and how it was handled.

The issue on the weekend was actually about a celebrity who is extremely controversial that some members wanted to see as a spokesperson and other members were dead set against him.

This had NOTHING to do with the disease and the group at the end of the day. Having someone famous talk about the disease would be helpful but they should be a little less offensive to a large portion of population.

I came to a decision that i would stop running the group if i was truly damaging it by being to kind. I even started accepting that after 6 years pouring my heart and soul into this group that maybe it was time to back away.

I received a large number of emails of support from within the group Monday and I am forever thankful to those that took the time to check in on me.

Tuesday morning I believe God intervened.

1.A local city politician asked to meet with me and have me help him because he has just been diagnosed with fatty liver disease. He respects this is a business for me and wants to pay me to teach his family how to read labels, how to determine what is a gmo veggie and which are not. How to start a small garden and how to conveniently start making meals from scratch.

Once i spoke to him i was energized with my passion for this disease and helping people again. The negative messaging about whether i am doing a good job or not seemed less important.

2. In the afternoon I received a tweet asking me what i wanted to ask for funding for from a group that helps create campaigns for crowd sourcing. I told them about my visions for raising awareness on fatty liver and they see it as a very worthwhile cause and they will help me get this going.

I rejoined my group on Tuesday I was clearly receiving messages from the universe that told me this is too important to back away from.

On Wednesday I was asked to speak at a women in progress lunch on avoiding fatty liver disease at the end of April and I will also be on a talk radio show in Toronto talking about fatty liver as well.

So while i am still quite hurt by the events of this, i lost a large number of friends because i try to look at all sides of a story before i make a decision. Each one who left and deleted me thought i was supporting the other side, when in fact i saw that they all had a point.

If you have gotten worse while you are in my group please let me know. If this is a common event I will reconsider my position again. I want to help not hurt people.

Please be kind to each other and please be even kinder to your liver

Fatty Liver Disease and Fibroscan Testing

As per the Canadian Liver Foundation:

FibroScan (FS) is a completely non-invasive diagnostic instrument to measure fibrosis (scarring of the liver) of the liver. FS uses an “elastic wave” (transient elastography) to measure hepatic stiffness which correlates with fibrosis. FS is based on the premise that as the liver becomes more fibrotic, the tissue density increases and the liver becomes less elastic. FS is easier to perform, safer and less expensive in comparison to a liver biopsy.  Measurements with the FS can be taken at multiple locations of the liver whereas a liver biopsy tissue sample is taken from one location in the liver.

Fibroscan is a new technology that assesses the stiffness of the liver. The stiffer your liver is, the more damaged it is by fibroids and dead liver cells.  I was very interested in this new testing method as my daughter has never been considered for a biopsy.  I also run a group on Facebook with almost 1200 members around the world. This is important as a new testing and monitoring tool for Fatty Liver Disease.

Biopsy is currently considered the gold standard in testing the condition of your liver. This is done with a needle that is inserted into the liver to take sample tissue out and analyze its condition.  The problem with this method is that you can’t test the entire liver. So if you are gathering samples and you don’t happen to hit an area where there is damaged tissue, the result will falsely indicate that you do not have liver damage. Blood testing also does not provide consistent reliable results. I have members in my group that are in the more advanced stages of the disease who receive clean blood tests. I do not understand why that happens but as of 2014 I do not see either of these as a complete picture of the condition of your liver.

The fibroscan machine looks very much like a standard ultrasound. There are 2 probes that are positioned on both sides and a computer screen in the centre that has 2 testing abilities.

The first test is looking for the fatty infiltration in your liver. They will use a probe with a short tip that captures the shear wave velocity. If the probe receives a quick response it has found damaged liver tissue and been returned because the wave cannot continue past the damaged liver. If the probe takes a longer time to get the wave returned it means that your liver is healthier.  My daughter lay on her back and then had right arm up over her head. She was directed to turn towards her left side so that the technician had the best possible access to the liver. A spot of ultrasound gel was placed in 3 spots on her liver.  The technician took the probe and placed over the gel spot. My daughter described the sensation like it feels when a doctor is testing your reflexes.  Approximately 10 readings are done for this test.

There is an important consideration for this test. If there is a lot of belly fat around the liver this test may not be able to access the liver with this probe.   My daughter was able to get this probe to read her liver.

The second test is looking for Fibrosis and also dead tissue in the liver.  The probe is longer and it is able to read deeper within the liver. The same process is used and the results of both tests are sent to your hepatologist to be assessed.

The test results can provide you with a sense of the current status of your liver and if it’s done yearly you can monitor the progress of your recovery or additional damage that is occurring.

The Fibroscan technology was just released and approved in the United States in April 2013. The Toronto Fibroscan Clinic is receiving patients from the states as there are long waiting periods for the testing and the costs can be very high.  In Toronto you are not going to have a long wait to get the test done and you will be paying closer to 100 dollars versus 400 +. The Toronto Clinic can be reached via :

Sun Life Financial Centre

3300 Bloor Street West

Centre Tower, 11th Floor, Suite 3140

Toronto, ON  M8X 2X3
info@liverscan.ca

Tel: 416-268-0150

Fax: 647-494-3243

www.liverscan.ca

 

My daughter’s results came in with the following findings:

“ This FibroScan® suggests mild steatosis (grade 1) with mild fibrosis (stage 1). The prognosis is excellent. In patients with liver stiffness <6 kPa, the estimated 3-year risk of liver-related complications/mortality is ~3%.

 

RECOMMENDATIONS:

1) Management of risk factors for fatty liver (e.g. weight loss, optimization of diabetes and dyslipidemia, and alcohol minimization).

2) Recommend a repeat scan in 1 to 2 years for disease monitoring. “

 

Robert P. Myers, MD, MSc, FRCPC

Hepatologist, Medical Director, Liver Scan Direct

Dr Myers sent the following note along with the results:

Hi Michelle. Attached is Megan’s report. The good news is that it suggests only mild, stage 1 fibrosis so the medium term prognosis is very good. I hope it reassures you two somewhat. Unfortunately the Fibroscan can’t differentiate NASH from non-NASH, but fibrosis is the most important outcome.

 

What this gives is a baseline, we do not know if when she started with this disease in 2008 it was better or worse than the stage 1 steatosis and mild fibrosis. Now we will refocus our efforts for clean eating and have this test redone in a year to see if this is reversible with diet and exercise or this will be permanent damage that my daughter will need to be aware of.

So with these comments and the results I want to stress that Fibroscan will not be the only test that you should rely on for answers about the current stage of your disease. You should note that this test cannot differentiate between NASH and NAFLD.

My recommendation is that when you receive a blood test that indicates higher values in the ALT and AST results have that confirmed via an ultrasound. The ultrasound will confirm if fatty cells are present in the liver based on the difference in the way they are displayed on the screen. The ultrasound can only tell you if they are fatty cells whether there is fibrosis, or NASH is not confirmed via ultrasound. If both the ultrasound and the blood tests confirm the presence of fat in your liver, then you can use the non-invasive Fibroscan test to determine if there is fibrosis. If there is further clarification required the Liver Biopsy can provide an analysis of a specific section of liver tissue.

Fibrosis indicates that there is Scar tissue in the liver. This occurs when the liver tries to repair damage in the liver and the repair process goes wrong. The more often this happens the more serious the liver disease will be. The damage can be caused by alcohol, prescription drugs and viruses.  When the liver is composed of more scar tissue than healthy tissue the disease has advanced to Cirrhosis.

I would advise patients with fatty liver disease to consider the Fibroscan an important part of monitoring the progress or improvement of the disease.

 

Another Fatty Liver Death, Get Tested, Find Support!

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, Michelle, Ruth 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!

 

Kiran Chatha 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.

Robin Shaw 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.

Marguerite Elliott 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.

Denise Miller-Powers 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

Connie Kaye 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!

Cheryl Lynn 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!

Suzy Freeman 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.

6 Years for a complete diagnosis! This HAS to change!

My daughter was first told she had NASH in 2008 at age 11, now I know that there is NO way that this pediatrician could have known if this was NASH or NAFLD from the ultrasound and blood test results but he was the first to say no reason to do a biopsy or any other tests. My daughter would just have to exercise and eat better.  No other advice was given, no direction as to what it means to eat better with liver disease.

As the years went on we had all kinds of doctors discount my daughters illness, I asked for referrals to a hepatologist and we were sent to a gastroentologist who also shrugged their shoulders and said no point doing any additional testing. My child has been through hell for the last 6 years with extreme vertigo, broken bones that wouldn’t heal, extreme menstrual bleeding and more colds and flus than I can count. Nothing is simple for my daughter any type of trauma to the body in illness or injury takes her down for weeks, never just days like the rest of us. 4 months for a broken toe, that the rest of us would see heal in 6 weeks!  No doctor has ever said hmm well maybe the issues in her liver are causing other things not to work as well in the body.

The liver controls our immunity, the liver controls our metabolism, our eyes, our toxins to the skin causing rashes. When your liver is compromised then there are serious impacts on your day to day life.  But no doctor has ever figured this out for my daughter.

So last week my daughter had a new non invasive test in Toronto called the fibroscan.  This does not need a referral and we were able to book a quick appointment If we had not had this test done we would still be in the dark as to the actual condition of my daughters liver.  The test was easy and fast and no negative impacts on my daughter. The results say that she has mild stage 1 steatosis and mild stage 1 fibrosis. The most important part is clearly fibrosis. This means that she has scar tissue in her liver and it means that the disease is more serious that any doctor has ever considered.

The good news is we now have a baseline to work from and we will focus everything on getting that fibrosis reversed. However, what we will never know is was the disease worse 6 years ago? Has it improved or gotten worse?

If any doctor in the last 6 years had considered the full picture for my daughter ,maybe we could have done this sooner. but nope she will be just fine they said…. Fibrosis folks …not just fine.

Demand that your doctor get the official details of your disease with a biopsy and/or a fibroscan! DO not let them say you will be just fine! IF we did not take this seriously my daughter could be on the transplant list by now. If not for my supporting those with this disease and not letting it go….this could be a much worse story!

 

Fatty Liver Disease – Do Not Dismiss this Diagnosis!

Fatty Liver Disease is a growing epidemic all over the world. I have been writing blogs and running a support group for people with this disease since 2008. The group has well over 1000 members now and I have learned a lot from running this group for the last 6 years. I have started writing a book that will be available this spring that shares stories and quotes from the members of the group and covers the following topics in detail plus lots more!

1. This disease doesn’t only impact obese people! People with eating disorders, skinny fat people with fast metabolisms can be impacted if they are malnourished. Children as young as 2 are in my group and there are at least 2 genetic factors that have been identified so far.

2. Its Not just Food! Food absolutely plays a large part in the management of this disease. If you have lived on processed foods your whole like you have a lot to learn about eating healthy to protect your compromised liver for the rest of your life. Acetaminophen is being overused and it is creeping up to becoming one of the main factors in causing Fatty liver Disease. Statins show up a lot in my group being pointed at as a high number of people get diagnosed after they start that prescription. Antibiotics, chemicals that you work around, products that you put in your hair or on your body can also be the root of your compromised liver.

3. There are REAL symptoms associated with this disease. No matter how often a doctor will tell you its benign I can tell you from 1000 people that there are shared symptoms within the group and if most of them share a symptom I am confident that the symptom is related back to the compromised liver.

4.People die from ignoring this disease. I have seen at least 10 people die in the group in the last 6 years. The truly sad part is that it is usually due to the fact the doctors told them that they just needed to exercise and lose weight and the problem would go away. That can be true if you do that at the beginning of the disease setting in. BUT if you do not figure out WHAT caused your disease and eliminate that item I can promise you that your disease will continue to grow until you start to deal with water retention and are being admitted to the hospital because your liver is extremely damaged now and you need a transplant. This can be avoided by truly analyzing your lifestyle up to the diagnosis and determining what the possible sources might be.

5. There are success stories! I have members who have had transplants and members that have reversed the disease in its early stages.

 

If you would like to be part of our fatty liver disease support group you can find it here at this link:

https://www.facebook.com/groups/fattyliversupport/

 

Arbonne Body Care and Cosmetics – Fundraising for MetoWe Camp!

I have been lucky enough to try Arbonne products thanks to numerous amazing ladies I am connected with on social media. Arbonne_® products are vegan-certified: their formulas are never tested on animals and do not contain animal-derived ingredients or animal by-products. Due to the growth in Metabolic disease and Non Alcoholic Fatty Liver Disease this is very important to me and to those I care for. The chemicals being added by other companies are hurting our bodies in a toxic world.

To read about the products go to http://www.arbonne.ca/products/index.asp

To read about the company go to https://www.arbonne.ca/company/manifesto.asp

Megan wants to attend A Social Innovation for Change Camp this summer. This camp offers an amazing leadership opportunity that will be able to help Megan bring back to our community through volunteer work and other humanitarian efforts. Megan will be working with industry professionals to help her learn ways to create tangible changes. To learn more about this camp go to Me to We’s website.

http://www.metowe.com/motivation-leadership/take-action-camp/ontario-take-action-academy/#social-innovation-for-change-fostering-creative-and-innovative-ideas-for-positive-social-influence

Megan is 16 years old and a junior at Sir Frederick Banting Secondary School The opportunity to attend this camp would mean the world to her as she looks towards a career in human rights law after fighting for 6 years with a chronic illness called Non Alcoholic Fatty Liver Disease that left me in various states of extreme sickness throughout that time. She has impressed Investor’s Group enough so that they have given her a bursary to  cover some of the costs, but with me as a single mother she need help to raise the remaining funds. Human Rights are a huge passion for her and she will  make a difference in both the local and international community.

Janet Auty-Carlisle is a great friend that I have not had the pleasure of meeting in person but I have known on Social Media for a good 5 years. Whenever there has been an opportunity to support Megan and I in that time she has always stepped up and been wonderful.

Now she is offering to give Megan a nice percentage of all sales in May for Arbonne products purchased online with Janet’s Sales ID.

So if you want to help Megan and you want to help your body by using non toxic products go to

https://www.arbonne.ca/shop_online/shopOnline.asp

Orders can be placed in North America, United Kingdom and Australia. You will need to enter the 9 digit id 115726215 to get the fundraising donation to Megan.

Thank you in advance from your liver and from Megan!

 

Baking Fundraising for Me to We Camp!

Megan Clermont described this perfectly I have adjusted slightly.

Do you like baked goods and helping out a good cause?

For the month of May my daughter will be baking a variety of home baked cookies, breads, and cupcakes with all proceeds going towards fees for a Me to We Take Action Camp this summer. Prices for these items range from $1-$7.50 with a total of $500 needed to be raised for the cost of attendance.

This camp offers an amazing leadership opportunity that will be able to help Megan bring back to our community through volunteer work and other humanitarian efforts. Megan will be working with industry professionals to help her learn ways to create tangible changes. To learn more about this camp go to Me to We’s website.

http://www.metowe.com/motivation-leadership/take-action-camp/ontario-take-action-academy/#social-innovation-for-change-fostering-creative-and-innovative-ideas-for-positive-social-influence

Megan is 16 years old and a junior at Sir Frederick Banting Secondary School The opportunity to attend this camp would mean the world to her as she looks towards a career in human rights law after fighting for 6 years with a chronic illness called Non Alcoholic Fatty Liver Disease that left me in various states of extreme sickness throughout that time. She has impressed Investor’s Group enough so that they have given her a bursary to  cover some of the costs, but with me as a single mother she need help to raise the remaining funds. Human Rights are a huge passion for her and she will  make a difference in both the local and international community.

If you live in the GTA of Toronto Ontario or Southwestern Ontario we would be happy to deliver the baked goods to you. Sadly we can’t do this beyond that geographical area.  There will be 2 days that deliveries will be made to the Toronto area. This offer is limited to the month of May 2013.

In order to support Megan in this amazing opportunity please go to the attached order form and fill out your information and order request and submit to have it sent to Megan.

https://adobeformscentral.com/?f=PbKTYKRgo2IZr23pmmLnIA

 

 

 

 

 

 

Dr Robert Lustig – Sugar The Bitter Truth

I came across Dr Lustig for the first time on Youtube on November 1 2011. I was flabbergasted when I watched Sugar The Bitter Truth and I learned that high fructose corn syrup and sugar in general was directly related to Fatty Liver Disease and causing us all to be addicted to foods with it. I emailed him the next day and told him about my 15 year old daughter and the issues she had with her liver, extreme vertigo, fainting and insomnia. I researched him online a bit and found that he was a pediatric endocrinologist for 32 years. In that time, he had watched the obesity and metabolic syndrome rates climb, first to the level of epidemic , and now the rates in other countries qualify this as a pandemic. Worse yet, these problems are occurring in infants and toddlers, who clearly cannot be guilty of character flaws. He was the man I had been waiting for since 2008. The one who could help me understand my daughter who had been sick since the age of 11.

He replied to my email and I recall being in tears as he told me that he was performing liver transplants on kids younger than my daughter with NAFLD. He told me kids as young as 2 were showing up with their livers already filling with fat cells. This email and that video changed something in me. I became very passionate about making sure every parent understood that sugar is poisoning their kids. I would tell them my daughters story and beg them not to let their children live on processed foods.

I found out the next year that our children will be the first generation that will live shorter lives than us and that is NOT OK with me. I don’t care if you want to saddle me as a 44 year old obese woman with a liver disease that could kill me but you cannot have our children. This craziness has to stop.

Doctors in general do not understand the serious nature of fatty liver disease. They do not yet understand how it changes from NAFLD to NASH to Cirrohsis but it is happening very quickly and I have seen 10 people die due to that speed and not having the chance to get a new liver. The youngest was 30 years old.

So when I see that Dr Lustig is starting a Responsible Food Mission I signed up immediately This is critical for our future and the future of our children. If things don’t change in the way we manufacture foods soon I will see people dying in my liver support group at younger and younger ages.

So I am calling you to action.

1. Go to youtube and watch Sugar the Bitter Truth http://www.youtube.com/watch?v=dBnniua6-oM

2. Go to http://www.responsiblefoods.org/ and register for his mailing list and call to action we need to support him!

3. Buy his book Fat Chance. Trust me this is the man to believe no matter what else is being fed to your mouths and ears from corporations and lobbyists.

We need to do this together!

Join us on Twitter at @fattyliverhelp

Join us on Facebook at https://www.facebook.com/groups/fattyliversupport/

and join our new website at http://www.reversefattyliverdisease.com/

My daughter Megan’s story

If you haven’t known me for more than 4 years you are not aware of the incredible challenges that my 16 year old daughter has been through.

She got sick in 2008 with pneumonia, that was followed up with mono, this essentially destroyed grade 6 for her

She got sick in 2009 with extreme menstrual bleeding and fatty liver disease essentially making grade 7 a right off.

She got sick in 2010 with extreme vertigo and spent 10 months in a wheelchair. She almost attended no days of school in grade 8.

Doctors, and family members did not hide that they thought this was all in her head and that she was just trying to avoid school .

Her self esteem was as low as it could be with people calling her a liar and thinking she wanted to be sick

She was put through to grade 9 without completing any real schooling in grade 8. Megan was certain they had given up on her too.

Megan got healthy in June 2010. A ton of work with my holistic coach Brandon Krieger , osteopath Jason B, and Megan hated the extreme healthy foods that she was forced to eat.

But in the end , nothing any doctor has done for her made any difference. Osteopath and holistic eating did the trick.

She entered grade 9 and we ensured her first semester was light. She took applied french, academic math, drama and art. No one had any expectations and honestly I worried she would get sick again in September.

She insisted on getting help from my Aunt Pat all through the summer,she wanted to be prepared for grade 9 math and megan worked extremely hard. It helped that my aunt believed in her and slowly but surely Megan’s confidence was rebuilding.

Megan worked hard on homework, she asked to see my aunt whenever she felt insecure about a math concept. My aunt constantly told her she was doing well and that all Megan needed to do was to take the time to read the question properly before she started working on it. Mistakes she was making were small ones all related back to not reading the question correctly.

Grade 10 started in London Ontario and Megan was only able to manage a month before colds and flu’s started attacking her and she doesn’t heal from those for 2 -3 weeks. She had to once again move to home schooling and online learning. She worked hard and did very well in the credits she was able to accomplish.

Megan struggled so much over these years with low self esteem and no hope for her future. She was terrified that she would be unable to be a functional adult and unable to ever have a normal life. She got so upset about how far behind she was in school. That was so heart breaking for me to hear said she couldn’t hear me yet.

Fast forward to Spring 2012 and I got asked to be a food revolution ambassador for Jamie Oliver. I needed to create a one day event. Megan was in singing lessons and enjoying them. I decided to have the Britown Music school perform during the kids event and i challenged Megan to Sing a song she was learning. She sang her heart out and life started to change!

My daughter Megan actually started flourished! She decided that she wants to be a lawyer, she wants to be accepted to the best schools for University. Her plan is to become a big part of her high school when she returns in September. This is huge for her, she was not in school last year due to her health and lack of sleep. She is fighting back and I could not be prouder of Megan! She is saying Screw you to her health issues and insisting on having the best life she can. She is volunteering for the Anti bullying coalition, she wants to fight for civil rights and her big goal now is to work at United Nations. I am her biggest cheerleader and I will be cheering for her all the way to the top!

Fall 2012 and Megan started Grade 11 with a very positive attitude and got involved in choir, a play, social justice committee, and on and on. Her grades were amazing and she was well liked by all her teachers. She got to participate in WE DAY in Toronto and that just inspired her more.

January 2013 Such a sad change Megan fell down 12 stairs and broke a toe. This would be a simple thing for other people but because megan doesn’t heal it took 3 months to even start healing. Once again stuck at home doing courses online. Once again feeling defeated.

She has another issue somewhere in her body that ensures she doesn’t heal for ages. I will take the xrays from this broken foot and ask to see a specialist to start looking into her lack of healing.

You are an incredibly smart girl with a great support system in my aunt pat, Grandpa Stan and your brother and me! You will continue to shine you will continue to flourish and I am incredibly proud of my baby girl! You prove everyone wrong and you rock and your life will shine no matter what health issue tries to take you out!!

Fatty Liver Disease in Children and Adolescents

Medical Files
Fatty liver in children and adolescents
By Rafael Castillo M.D.
Philippine Daily Inquirer
11:24 pm | Friday, April 12th, 2013

A few weeks ago, a chubby 14-year-old teenager was referred to our clinic due to a mildly elevated blood pressure. We did some blood tests and the liver enzymes were found to be elevated. He has no history of any liver problem like hepatitis in the past; he swore he has never tasted any alcohol preparation, and I believed him. We did an ultrasound to check on the liver and it showed an extensive fatty liver.
We couldn’t help but ask: How many of our young people already have fatty liver, which can remain undetected for many years, until it progresses into something much worse already like cirrhosis of the liver?
As the term implies, fatty liver consists of a collection of high amounts of fat around the liver. There are two types: alcoholic fatty liver disease (AFLD) and non-alcoholic fatty liver disease (NAFLD). The first type is due to an excessive consumption of alcohol, while the second one develops in non-drinkers, usually associated with an unhealthy diet, diabetes, cholesterol problems and obesity.
Simple fatty liver, also called steatosis, is due to the deposition of fats in the liver. There is no liver inflammation or scar tissue formation yet. And the risk of progressive liver damage is relatively low. Usually, individuals with simple fatty liver are symptomless.
Swelling
If the risk factors causing the fatty liver are not controlled, it can progress into a non-alcoholic steatohepatitis (NASH), wherein inflammation or swelling of the liver cells are present already. If the swelling persists, this can cause some liver cells to die; and if this becomes extensive as what happens in a few, it may lead to liver cirrhosis, characterized by extensive liver scarring.
I remember when I was in residency training in internal medicine, NAFLD was regarded as a benign condition, likely just a concomitant finding of being overweight, or being a diabetic. But published studies over the last 12 years now strongly consider NAFLD as a disease entity by itself, which can have serious consequences in the future if neglected.
Of course, the progression to a severe form may take many years, perhaps decades. But if one has already fatty liver at a young age, he or she would still be relatively young after three to four decades. And since the risk factors for fatty liver are the same risk factors that cause heart disease, metabolic syndrome and other diseases, the picture becomes more complicated.
The following risk factors have been implicated, which are all present in the adolescent patient we saw recently: unhealthy eating habits like eating high-fat concentrated, fried foods rich in bad cholesterol, “fast foods,” sugar-rich snacks; lack of physical activity or sedentary life; and being overweight or obese.
Fatty liver is now truly becoming highly prevalent even in children and adolescents with the so-called modern diet and modern lifestyle we have today. For the more adventurous teenagers and young adults, a fat-rich diet coupled with alcohol drinking significantly increase their risk of developing fatty liver.
Healthy eating, regular exercise, and drinking in moderation—or better yet, complete avoidance—are simple ways to prevent a fatty liver disease, and if practiced at an early age, can go a long way in preventing fatty liver. Our schools should inculcate this in our youth’s mind, as part of the curriculum.
Increasing prevalence
With the increasing prevalence of obesity in our children and young adults, the risk of developing fatty liver has remarkably increased too. In 2008, obesity has ballooned to 25 percent from 1987 statistics of only 13.5 percent. Type 2 diabetes mellitus, not the insulin-dependent type, has also been increasingly reported in obese children and adolescents.
Not all cases of fatty liver will have a sad ending. But if it’s a loved one who has it, we don’t want to take any chance of it developing into something much worse than just fatty liver. So we need to teach our kids at an early age to practice healthy lifestyle and good eating habits by avoiding fatty foods like junk foods and French fries. Adults should also show them the example on “responsible drinking,” but at their age, they should be encouraged to lay their hands off the alcohol bottle.
Chubby kids may look cute and healthy, but not if they already have some “precursor diseases” like prediabetes, prehypertension and fatty liver. By allowing them to get used to an unhealthy diet and lifestyle, we may be unwittingly compromising the health and lives of these children and adolescents. Let’s take pity on these young souls.

If you or your child has Fatty Liver Disease please consider joining the support group on Facebook called Fatty Liver Disease Support Group. You will need to request to join but we are there to support you with 400 members across the world