Friends for Life UK

Diabetes Cured- What I'd Do First

I don’t know how long it took me to realise after my diagnosis of type 1 diabetes that what people were telling me about the cure being found in five years was total tripe! But I did! Not only that but I actually gave up all hope of it. Not in a bad way, I just got on living my life with diabetes and tried new treatments and didn’t spend much time thinking about a cure. That is until I heard Aaron Kowalski speak at the Friends for Life UK conference in 2014. This talk was the most EXCITING and positive that I attended at this conference and I came away with a solid belief that the next best thing to a cure (either the Artificial Pancreas or Beta Cell encapsulation) is probably more than 5 years away but it's close.

By the way, there is a Friends for Life UK conference happening this October and I believe there are less than 100 tickets left which can be booked here.  Find out more from their Facebook page.

Anyway, back to a diabetes cure and what if there was, some day, a cure? What would I do first?

I’ve struggled with an answer to this because there are so many things I could do, like eat a whole chocolate cake in one day but I feel like I really wouldn't truly feel happy after the first slice. but what would I do first and most enjoy?

Then it came to me in a dream a couple of weeks ago and I remembered to write it down. I was on a very long, leisurely and invigorating walk. It was somewhere beautiful like the Burren, the view was spectacular. I was carefree and felt weightless. I was not one bit worried about my glucose levels at all. I didn't have my glucose meter or supply of glucose with me - my rucksack so light. It was a good dream! It was a dream that made me feel happy when I woke up.

It was a dream where I didn't feel lost if I woke up tomorrow morning and my type 1 diabetes was gone. I've been doing diabetes over half of my life and a lot of what I do is habit. I do glucose checks without thinking. Not only that but my blogging, advocating, reviewing educational material for pharma companies & event organising takes up so much of my life and I love doing it. So what would do instead? I suppose the answer is anything. And whatever I wanted.

Now I was on a roll and I thought about what it would be like to eat when I was hungry I may even enjoy food again. Be enthusiastic about delicious food instead of seeing meals as math problems.

Or What would it be like to go to the beach and not worry about sand getting into my medical devices or trying to keep test strips and insulin cool? What would it be like to go through airport security like a person without diabetes-oh wait that actually happened :-) see here. What would it be like just do something spontaneous?

What would it be like to have all that space in my brain that's currently occupied by diabetes related decisions?

What would it feel like to not know what my glucose so levels were every minute of the day, but still know that they were normal???

Well now I've opened the can of worms I can't seem to stop.

Thrive-abetes; Thrive with Type 1 Diabetes Conference

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I was lounging on my couch beside my hubby one Saturday afternoon looking at my registration for Friends for Life UK (FFL) and thinking to myself "Why do I have to go to London to avail of an inspirational and motivational conference like FFL?"

My ever-supportive and crazy-ideas husband said "Sure you could pull off something like that, NO PROBLEM!" Sometimes I wonder about him?
Well that's where the idea for Thrive-abetes; Thrive with Type 1 Diabetes came from.
Well, what is Thrive-abetes?

Thrive-abetes is an abbreviation of “Thrive with Type 1 Diabetes”. It’s a one day conference for parents of children with diabetes and adults living with type 1 diabetes, taking place in Ireland on Saturday the 3rd October 2015. The event is supported by Diabetes Ireland, the national association for people with diabetes in Ireland (Registered Charity No. CHY 6906).

Why do I need this event to take place?
I want to meet more people with type 1 diabetes; I want to hear their stories and draw support from them. I also want to learn more about ways to cope with my type 1 diabetes every day.
I am fortunate enough to meet some people with type 1 diabetes face to face but others are not. Through the amazingness of FaceBook, I've learned that others want what I want. We have done the research to prove it!
This conference is needed because one of the best sources of support and information to families with Type 1 Diabetes is other people with Type 1 Diabetes. We would like a non-virtual place to meet, share and support each other.

This type of event does not exist in Ireland.....until now!

What is Thrive-betes going to offer?
Our Type 1 Diabetes conference is going to focus on the psychological impact of living with a chronic, lifelong illness. We aim to provide “Inspiration, Motivation and Information”  to people living with type 1 diabetes, both parents of children with diabetes and adults at our conference.
We have invited  speakers who are internationally renowned in the diabetes community and we are confident we can attract a minimum of 200 delegates. We are also being supported by Diabetes Ireland, the national association for people with diabetes in Ireland.
You can find out more about Thrive-abetes here.

Why do we need to raise money?

Some of the cost of this conference will be raised through delegate registration and exhibitor fees but we still need to raise €6,000 to ensure that this event takes place.

We have launched a crowdfunding campaign with an Irish company to try and secure as much of this amount as possible. All donations will be directed to Diabetes Ireland (registered charity no. CHY 6906) and would be greatly appreciated.

How can you help?

The success of a crowd-funding campaign depends HUGELY on making as many people as possible aware that the campaign is happening. 
The first thing that people can do to help this conference happen is to post this link; https://www.icrowdfund.ie/campaigns/thrive-abetes-thrive-with-type-1-diabetes-conference/ on your social media page with your reasons why you want this conference to happen.

The next thing I would ask people with type 1 diabetes in Ireland to do is to consider asking your employer to donate to the campaign.

Then, if you can think of any other businesses or employers that would give generously to this campaign, contact them or ask me to contact them on your behalf.

Maybe you don't know of any businesses off-hand but you can also help us by posting on all social media. You can copy my post on Facebook or share it.

Please help us make this happen!!!

Diabetes and Mental strength

I was reading a blog entry on TypeOneNation.org by Kady Helme recently, about her trial of the artificial pancreas. I was actually really excited to read it because I had imagined that wearing the artificial pancreas would be like not having type 1 diabetes at all. Especially after listening to Aaron Kowalski, JDRF's Vice President of Treatment Therapies at the Friends For Life UK conference in Windsor.


Anyway, it is a well written piece and not at all what I was expecting. I had a "stop-me-in-my-tracks" moment though as I was reading it, where Kady used a phrase that I feel encapsulates the big struggle we face every day in living with type 1 diabetes. The "struggle" that is sometimes there a lot or sometimes there only a little. She wrote; "It wasn't until I was without the AP system that I understood what a mental burden had been lifted.  It was such a treat to have something monitoring my sugar levels every five minutes and reacting to it. I only really had to focus on T1D at mealtimes."


We have lots of daily tasks that we need to do to live well with diabetes and that's what most people think is the difficult part of living with Type 1. But really, the finger sticks and injections are just small things in the big picture. Its what's going through our minds as we continue on with our day beyond the time it takes to complete those tasks. The "what if's", the toing and froing of the guesswork, the checklist of questions we have to go through before we make a decision on how much insulin to take. Questions like; when did I last take insulin and what did I eat at that time? Have I been active this morning? What am I going to do this afternoon, is it going to be active? When am I having my next meal? Will I have time to eat?


Any treatment for type 1 diabetes that can lift that mental burden even just a little is as good as a cure to me.

FFL/Children w/Diabetes, UK 2014 Diabetes Burnout

Avoiding and Overcoming Diabetes Burnout

Presented by Jill Weissberg-Benchell who is a licensed clinical psychologist and a certified diabetes educator for 20 years. She also co-wrote Teens with Diabetes: A Clinician's Guide which is available on Amazon. She currently works in Chicago, Illinois.

Do you know what Diabetes Burnout is? If you don't, you are so lucky! But I'm thinking that a lot of you know EXACTLY what it is. Or maybe you're not lucky, that you have experienced it but didn't know what it was called.
For me, diabetes burnout is the feeling of being done with diabetes, I feel so tired of having diabetes, tired of having to do all the things that I do to keep well. I still end up doing all of the tasks of type 1 diabetes but I don't have any energy left to process the information to make the changes that would make life better, easier.
So, I was especially interested in this session because I've been finding it more and more difficult to fight burnout and wanted more knowledge and power over it.
Firstly, let me tell you about how Jill Weissberg-Benchell should be worshipped. She does not have type 1 diabetes but she understands type 1 diabetes like she has it! People like Jill are few, very few. She could describe scenes from our lives as if she had been to all of our homes and witnessed it herself. She really got everyone in the room talking. 

However, I was a bit disappointed in the session because even though we laughed, cried, shared and patted each other on the backs; it was dominated by parents of children with type 1 diabetes. Usually, this isn't relevant but when the parents were sharing how they avoid burnout with weekends away from their children I was a "smidge" jealous. 

But my envy was short lived. Parents really do have a tough time and while I can't get away from my diabetes, I only have to take care of myself; I know exactly how I'm feeling at all times. I don't have to guess like a parent has to with a child.

That aside; Jill was a mine of information. She reassured us that today there is only a 3% risk that people with Type 1 will develop complications. I had suspected that this was true because of the better management tools and treatments available today. Its nice to have someone say it.
Also, when someone in the room voiced everyone's biggest fear; "dead in bed" syndrome, she said that in most cases (not all but in most) dead in bed is caused by alcohol or drugs. And I believe her because she is a medical professional, has access to the data, and because I need to believe her. 

I did get something out of this session that I hadn't expected. I realised that one of the ways I tackle burnout is through my diabetes support group. I always feel uplifted when I meet my other D-people. I do the opposite of what parents of children with diabetes do; I immerse myself in all things diabetes to try and avoid burnout.

Attending the Friends for Life UK conference in London was definitely exceeded all of my expectations and I met some fantastic people from the world of diabetes. People like Melissa & Lesley from InPuT Diabetes, Angela from Scotland, Joe Soloweijczyk from A Mile in My Shoes, to mention but a few. 

Friends for Life UK 2015 has been scheduled for October 30th to November 1st. More details will be announced on www.childrenwithdiabetes.com website.

FFL Children with Diabetes UK 2014 Diabetes Research; What's coming?

This talk was presented by Aaron Kowalski, from the Juvenile Diabetes Research Foundation (JDRF). Dr. Kowalski oversees JDRF-funded research aimed at accelerating the delivery and development of artificial pancreas systems.
He is also a person with type 1 diabetes and was diagnosed at the age of 13 in 1984. Prior to that, in 1977 at the age of three, Dr. Kowalski's brother was diagnosed with T1D.

 

This talk was the most EXCITING and positive that I attended over the 2 days because I came away from it with a solid belief that the next best thing to a cure (either the Artificial Pancreas or Beta Cell encapsulation) is only a couple of years away.

Artificial Pancreas (also known as a Bionic Pancreas or the closed loop system);

What is it?

There are two types of Artificial Pancreas, which confused me for a time. One Artificial Pancreas is a combination of an insulin pump containing rapid acting insulin, a Continuous Glucose Monitor (CGM), and a device such as a tablet or smartphone, which runs the software that communicates with both the pump and CGM.
The other type of Artificial Pancreas is two pumps, one pump contains insulin and the other contains glucagon, a different hormone that raises blood sugar when it gets too low. This system has an app that runs on an iPhone, which is connected wirelessly to CGM. This Artificial Pancreas was developed by Ed Damiano, an associate professor of biomedical engineering at Boston University.

Both Artificial Pancreases have successfully completed clinical trials and are very close to being “available”. In fact, we had a parent attending the talk who's daughter is participating in the overnight closed loop trials. She showed us a tablet with her daughter's overnight readings presented in a graph. It was such a straight line!

 

Why are people excited?

  • Both of these systems will take the guess work out of diabetes management.
  • There is minimum input from the user.
  • The Artificial Pancreas uses a pump that will shut off the supply on insulin if bloods glucose is trending low and will switch back on when BG’s come back into range.
  • Ed Damiano’s Artificial Pancreas releases glucagon to raise BG’s when they drop.
  • And it’s close to being widely available. Dr. Kowalski said that people would have it in two years and if you factor in the “builder’s estimate” calibration, I would estimate 4 years.
My concern, now, is how far behind in diabetes technology Ireland is in relation to providing insulin pumps for all. When the Artificial Pancreas becomes widely available and people start demanding it; there will be trouble.

Beta Cell Encapsulation;

What is it?

About a decade ago there was considerable excitement in the T1D community about islet cell transplants–the transplantation of insulin producing cells back into the body. But islet transplants have a big downside: high doses of potentially toxic immunosuppressive drugs are needed to block the same autoimmune attack that initially triggered T1D.

 

Encapsulation describes a therapy where a pouch composed of beta cells or islet cells, surrounded by a protective barrier, is implanted into the body. The barrier hides the islet cells from the immune system, providing a safe environment where they can function normally. The cells constantly assess the amount of glucose in the blood and release exactly the correct amount of insulin. And unlike islet transplants, no immunosuppressive drugs are required.

 

Why am I excited about this?

I'm excited about this because in my opinion its very close to a cure. There are no gadgets to wear. You would have to have them re-implanted every two years but that’s nothing compared to all the tasks I do daily to manage my diabetes.
Encapsulation is still a ways off but I'm really hopeful to see it in my lifetime.

Smart Insulin/Glucose Responsive Insulin;

What is it?

Smart Insulin is an insulin that would only activate when glucose if present in the blood. One of the problems in today’s diabetes management is that we can sometimes have too much insulin causing low blood sugars/hypos or too little insulin causing high blood sugars.

 

I’m sitting on the fence with this one; I don’t think I know enough about it.

Afrezza inhaled insulin;

 

What is it?

I will have to admit that when I heard the scientists were having another go at the Inhaled insulin I rolled my eyes. But having someone explain what it is and be excited about it got me interested. Not excited though;-)

 

Yes, it’s an insulin you inhale but it has a peak of 12 minutes. it works extremely fast and has been used instead of boluses, by Dr. Kowalsky himself. It works so fast that you can use it after meals and still avoid the after meal spike.

Diaport;

 

What is it?

This is not a new treatment option; it’s actually something that is available but isn’t very popular. I'm including it because I had never heard of it before.
The Diaport is a cannula that is surgically inserted into the stomach cavity, so the insulin works much faster than being infused with a pump cannula. Dr. Kowalski said that one of the problems with the current insulins is that they're too slow and can’t deal with the post meal spikes in blood sugars. Someone in the audience then spoke about the Diaport.

 

I love learning new information but this treatment option seemed like a last resort to me.

Regeneration;

 

Did you know that people with Type 1 Diabetes still make beta cells, no matter how long they have had it, but the immune system kills them before they can get making insulin. Regeneration is trying to find a way to protect them or fix the glitch in our immune system that takes them out.

 

Another one to watch but too far away to get excited about yet.

Round up.

 

As I mentioned earlier this was the most exciting talk that I attended. It was difficult not to be infected with Dr. Kowalski’s enthusiasm and excitement. But also being in the same room as someone who was using the Artificial Pancreas was electric. I feel that being so close to the technology was a signal to me that it is close and that we are actually talking about a couple of years.

 

Ireland better get it’s skates on!