Lyfebulb Social Club


This past week I was lucky to have been invited to Lyfebulb’s Social Club.  It was a cocktail party  in Rockefeller Center and brought together guests to connect and learn about emerging and personalized therapies in IBD.

For anyone that doesn’t know what Lyfebulb is, they are an organization dedicated to helping people achieve their optimal lifestyle by addressing general and chronic health concerns.  The founder of the company, Dr. Karin Hehenberger was there and started this company to help connect people with chronic illnesses.  Their main focus had been on diabetes, but now they are moving on to include people with IBD.

 

Low Res_Dr. Karen Hehenberger Addresses The Crowd

The night featured Dr. Neville Bamji, board-certified gastroenterologist and Clinical Instructor of Medicine at The Mount Sinai Hospital, who shared insights to what could be coming in new therapies to help manage  the diseases. Michael Fenterstock spoke to the crowd as the patient representative for the night, discussing his personal account of living  with IBD, including the struggles and the successes.

The event is a part of Lyfebulb’s Social Club series, a monthly cocktail parties focused on various chronic diseases. The offline extension to Lyfebulb’s online platform, the Social Club brings together thought leaders, patients, experts and renowned professional, in an informative and relaxed environment.

Lyfebulb is fairly new to the scene and this was their third get together.  They have many more things planned for the future including a radio station where people can call up to talk about their disease.

Many of you might be thinking that this sounds fun and exciting and how do you sign up for this.  For starters, you can check out their website here.   Right now they are based in NYC and I believe only holding events there.  For me, I got lucky to have found this group…or I should say they found me.  I had gotten an email from someone from a PR firm that works with them inviting me to this party.  When I asked how she found me I was told that she found my blog online.  I was so happy to know that my blog was very easy to find.

Low Res_Guests Attend Lyfebulb Social Club

I think Lyfebulb has some great ideas.  I met Dr. Hehenberger at the party and she really is an amazing woman.  She has so many great ideas on how to bring together the chronic disease community.  I know many of us in the IBD community tend to just talk with others in it, but as you know, we usually suffer from more than just one disease.  A company like this will bring many of the communities together as one so there is so much more opportunities to share your stories and hear others.  As well, we will all be able to find out new treatments that we might not know exists which benefit everyone.

I really want to thank Lyfebulb to letting me join their community and I look forward to going to more events with them.  Hopefully, down the road, I will have more information on treatments and different ways to help everyone.

 

 

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Follow up to “Crohn’s Disease in Teens Jumps 300% in 10 Years Fulled by Junk Food”


All our complaints over Dr Mitton’s comments made a difference.  Below is a statement she put out today.

 

20th June 2014

First and foremost I would like to apologise for the distress that I have caused by what was shown on the BBC to all Crohn’s disease and ulcerative colitis patients. I was unable to respond more quickly to the reactions to this report due to very heavy clinical commitments. I feel that what I said and the subsequent coverage has been misinterpreted and I would like to clarify this now.

I said that Crohn’s disease occurs in those who are genetically susceptible and that the unexplained recent increase in numbers diagnosed amongst young people in the UK is likely to be related to life style. I did mention pre diagnosis diet and multiple courses of antibiotics as possible factors preceding the development of overt disease in some cases. I did not say that junk food or frequent courses of antibiotics CAUSE Crohn’s disease. I am very aware there are many patients with IBD who eat a very healthy and nutritious diet and have always done so before their diagnosis.

However, since the initial report on 18th of June there have been subsequent newspaper and television reports that focus on the assumption that Crohn’s Disease seems to be “caused” by junk food and multiple antibiotics. This is not my belief and is a distortion.

I did not mean to imply any element of self-infliction and I am appalled to think this could set back public perception of IBD or that sufferers might be blamed for their own pain and misfortune.

I would like to sincerely apologise again for the distress that my comments have caused.

Dr Sally Mitton
Consultant Paediatric Gastroenterologist

Crohn’s Disease in Teens Jumps 300% in 10 Years Fulled by Junk Food


Junk Food

Now that I have your attention…the above headline came out today all over the internet.  It was from The Telegraph, a British paper.  The article can be found here – http://www.telegraph.co.uk/science/science-news/10908884/Crohns-disease-in-teens-jumps-300-per-cent-in-10-years-fuelled-by-junk-food.html.

What I wish, is that people would really think before they speak…or type.  First, the claim is that antibiotics used early in life is causing the IBD.  Coupled with that is the intake of “junk food”.  My favorite quote comes from a Dr. Sally Mitton.  She says, “Definitely, if you have a lot of junk food before your diagnosis it actually makes it more likely that you will develop Crohn’s Disease”.  Really?  REALLY?  This is by far one of the worst statements I have heard yet on Crohn’s.  If I eat bad right before a diagnosis then that was the cause.  So by her reasoning, if you are petting a dog and suddenly have a heart attack, then the petting of the dog caused the heart attack.

I really don’t know how someone is allowed to put this in writing without any sort of empirical data to back it up.  So let’s look at my life.  Before diagnosis I hadn’t really had any antibiotics so that isn’t what killed my gut.  As far as junk food, I did eat junk food but I also ate healthy food.  And what about all the people who had IBD before mass-produced sugar products?  What is the reason they got IBD.

Oh wait, it’s coming back to me know.  IBD is genetic and hereditary.  It is something that gets passed down and is in our DNA.  I guess that well-educated doctor didn’t read those articles.

Dr Sally Mitton goes on to say that people can manage their disease by altering their diet.  Um…again not true.  Yes, food can play a role for many people.  But what about people who can’t touch food at all and have to go on TPN?  As we know, there is no one diet for IBD.  Everyone is different.

I swear, every time I think we are making progress with these diseases, something comes out to push us back.  How many people are going to read this article and believe it.  Now we are going to have to hear people say.. “Stop eating junk food and you will cure yourself”.  Ugh.  Ignorance.  I can’t stand it.

As far as the antibiotics go, does she realize that antibiotics are also a treatment for CD?  Hmmm.  It can cause it and then cure it.  Amazing.

Honestly I don’t know what is worse.  A doctor that believes all this, a reporter that will write the article or a paper that will print it.