Thriveabetes

Type 1 Tea Party Time

Put the kettle on for a Type 1 Tea Party and raise much needed cash for type 1 diabetes research! April 21 has been designated as Type 1 Tea Party Day. The Type 1 Tea Party is a JDRF UK fundraising initiative with their Irish research partner, Diabetes Ireland. All funds raised will be split between funding Irish Type 1 Research through Diabetes Ireland Research Alliance and International Type 1 Research through JDRF UK. Diabetes Ireland has been hugely supportive of Thriveabetes since it's beginning. And I can safely say that there would not have been a Thriveabetes without them, and definitely not without it's CEO, Kieran O’Leary, or their Advocacy & Research Officer, Anna Clarke. So, I’m asking as many of you as possible to support the Type 1 Tea Party.

WHAT IS JDRF?

“JDRF is an organisation where a deeply personal connection to type 1 diabetes is present at every level." The  charity was founded in the US by two mothers of children with type 1 diabetes in the 1970's, Carol Lurie and Lee Ducat who along with a "number of other men and women, often with a personal connection to the condition, helped revolutionise type 1 diabetes research and increase public and political knowledge and awareness."

JDRF UK was set up as a charity in 1986. Their commitment to eradicating type 1 diabetes and its effects for everyone in the UK with type 1, and at risk of developing it is unwavering. JDRF is globally focused on:

  • funding world-class research cure, treat and prevent type 1 diabetes,
  • making sure research moves forward and treatments are delivered as fast as possible and
  • gives support and a voice to people with type 1 and their families

 

What Kind of Research?

JDRF’s investments are delivering on the promise of making life with T1D better, driving innovation and research around the world within six different therapy areas: artificial pancreas (AP), beta cell replacement, glucose control, T1D prevention, restoration and complications. Here is a review of their accomplishments in diabetes research in 2017.

 

Here are some examples of the ongoing Type 1 Diabetes research:

 

Irish Diabetes Research

The Diabetes Ireland Research Alliance (DIRA) was set up in 2008 as a subsidiary of Diabetes Ireland, the national charity supporting people with diabetes in Ireland. The Alliance primarily funds high quality diabetes research projects in Ireland and raises the necessary funds to support these projects. Here are some of the research projects funded by this initiative.

 

IS IT TEA TIME?

Tea parties or coffee mornings are not a new idea in the fundraising area but they are fun, effective and a great way to bring people together, for example, here are some fun tips on hosting your Type 1 Tea Party that will cause a stir for a cause?!? The Fundraising packs, WITH BUNTING (!!!), are available from Diabetes Ireland by registering to host here. AND there’s even a teatime table quiz.

 

How can you resist?

PS If anyone in Ennis can provide a venue I’m onboard with planning? My house can only take about 15 people.

50 years of Diabetes

Some of you may know Anne Daly, from the scrumptious website “The Artisan Diabetic” but do you know that she has lived with type 1 diabetes for 50 years? This weeks post is from Anne who takes us briefly through all the changes in diabetes over those 50 years and what inspired her to start The Artisan Diabetic.

Representing a Generation of 50 years of Diabetes

My name is Anne Daly, and I am a Galway girl, living in lovely countryside outside Loughrea. ‘Girl’ is a bit of an exaggeration, seeing as I have type 1 diabetes (T1) for 52 years. I was diagnosed when I was 3 years old.

Treatment and knowledge has come a long way since I was diagnosed.

My insulin was injected using glass syringes with steel needles, which were reused. They had to be boiled to sterilise them. I can still remember the smell of methylated spirits when the syringe container was opened.

Meals and insulin routine was very regimented due to the insulin and lack of knowledge about glucose at the time. Anything with sugar was banned, apart from sugar for hypos. There was no internet and very few books about diabetes. The life long learning about T1 ‘bug’ didn’t hit me for many years after that.

Urine testing was the only method of glucose testing. It wasn’t accurate and it didn’t show if glucose levels were dangerously low as it could only identify ‘no glucose present’ or ‘glucose present’. It was also very inconvenient.

I had to attend the Mater Hospital in Dublin for routine things like getting tonsils and appendix removed due to T1. Hospital stays were much longer and included multiple blood tests and being on a drip for days. Thankfully all that has changed. If I had a procedure today I would expect to be home in the same amount of time as someone who doesn’t have T1.

I was a bit rebellious in my teens, eating sweets (they weren’t allowed then) and not giving the correct insulin. I had no idea how to factor enough insulin for anything except bread and potatoes. I eventually ended up very ill in hospital. The thought of the inevitable consequences has kept me on the straight and narrow most of the time since then.

I was lucky to have two healthy babies despite the lack of a blood glucose meter. Thankfully neither of them has diabetes. When they were small, the attitude of doctors was that I would get complications and live a much shorter life because of T1. Of course, I hoped that I wouldn’t die before my children grew up. So, I’m amazed to be still here! I’m lucky that my husband Pat is very supportive and never complains about any delays due to T1 or the bedside light being on in the middle of the night due to highs or lows.

My life is enhanced with each new development

My life is enhanced with each new development that comes along, from different types of insulin, pens, needles to meters. When I got my first blood glucose meter in 1984, it took a while to realise that it was life changing.

At the moment I take multiple injections but I will be going on a pump later this year. I have been using the FreeStyle Libre system for over a year and I love it, but not the cost! I had no idea what happened my blood glucose overnight until I started using Libre. It has eliminated setting alarms in the middle of the night to check my background insulin and I have been able to tweak my basal insulin and food to get fairly good overnight levels.

I work to keep my awareness of low and high blood glucose, which is hard to maintain the longer you have T1. I am always conscious of getting a hypo in public. When I was young I was very embarrassed about having diabetes and also felt that if I didn’t keep it well managed at all times, that I had failed.

About 10 years ago I got very interested in the nutritional aspects of food. I hate the term ‘diabetic diet’. I have more a hatred of unhealthy additives than I have of sugar.

Food has changed so much particularly in the last ten years.

I have tried lots of different things to influence my glucose levels, some successful and some not. Different things work at different times of my life, so it’s an evolving process.

Until recently, there was no awareness of the stress of having diabetes. T1 has been challenging and sometimes stressful many time over my life, but there is nothing for it but have a moan, sit down and think about what I can do to sort out any issues and get on with it. T1 problems sometimes pop up and go away for no reason. Overthinking makes me stressed which makes it worse, so I try to get out and meet friends, do something a bit different or sometimes I just need a rest.

I used to be critical of myself when I misjudged the amount of insulin I gave and ended up high or low. I eventually accepted that I was doing my best and couldn’t replace a pancreas.

I never thought about the length of time I had T1 until I celebrated my 50th birthday and realised that in only 3 years time I would have lived with my co-partner T1 for 50 years too. I searched online for other people who had it for 50 years and longer and I found references to people but nothing written by the people themselves. I decided it was time to represent my generation’s T1 population. I hope I have done that in theartisandiabetic.ie. I had no T1 online presence before then and I found a whole new support group from all over the world that I never knew existed.

I am a Quality Technician by trade but I am studying nutrition and I hope to be of help to others in the near future. I made and decorated wedding cakes and gave cake decorating classes for about 15 years before becoming a QT, so I have handled a lot of sugar both inside and out!

 

Thank you Anne for sharing some of your diabetes story with us. You can follow Anne on The Artisan Diabetic on her website, on Facebook and on Instagram as TheArtisanDiabetic

D1 Now Young Adults with Diabetes Panel

Our blog post this week is from Dr. Deirdre Walsh from the D1 Now Research programme. Some of you may have met Deirdre at Thriveabetes. D1 Now is a Health Research Board (HRB) funded research project which is aimed at improving engagement between young adults with Type 1 Diabetes and their healthcare providers and ultimately improve their self management and diabetes-related health outcomes.

D1 Now aims to improve engagement between young adults with Type 1 Diabetes and their healthcare providers and ultimately improve their self management and diabetes-related health outcomes.

 

I first came across D1 Now in June 2016 at its launch and have met some of the members of the young adults with type 1 diabetes panel. This initiative stems from the "Nothing about us, without us" ethos. The panel are introduced to how the world of research works and are an integral part of designing research in the type 1 diabetes area.

 

 

The importance of the D1 Now Young Adults with Type 1 Diabetes Panel- Be a part of it!!

By Dr. Deirdre Walsh, D1 Now programme manager, on behalf of the D1 Now team.

Sitting down to write this piece I wanted to reflect on why we are asking people to get involved and be a part of our D1 Now research team. I have been tweeting and shouting about Young Adult Panel information sessions for several weeks now-but why?

The ‘why’ is a no-brainer for me; as part of a research team engaged within the health service it is imperative that we engage fully with people who use this health service. The aim of D1 Now is to improve positive outcomes for young adults [18-25 years old] who are living with Type 1 Diabetes.

Unfortunately, existing evidence show a lack of high-quality, well-designed interventions aimed at improving health outcomes for young adults with Type 1 diabetes. To address this issue, our multidisciplinary D1 Now team at the School of Medicine, NUI Galway led by Prof. Séan Dinneen have been working since 2014 to develop a new intervention to reimagine diabetes care for young adults. Simple? Not so much!

Improving outcomes for young adults is not an easy task, as many of you know, dealing with Type 1 Diabetes (T1D) requires an intensive self-management routine. This is especially challenging in times of transition when diabetes is one of many demands on time, effort and headspace.

When the D1 Now Young Adult Panel (YAP) was formed several years ago, the team made a commitment to involving young adults at every step. Regular YAP meetings, conference participation, speaking at events, involvement in journal articles and funding applications- the YAP have been there at every step to guide and help build a new way of approaching this issue.

There are several reasons why D1 Now would not be the same without the Young Adult Panel. Many of the D1 Now team are researchers working in the area of Type 1 diabetes but have never lived with the condition. We do not have the lived experience of Type 1 Diabetes.

As a research team we knew we wanted to make a commitment to ensure that young adults are at the centre of discussion around their care and shaping the way forward. Their involvement has led to a better understanding of what needs to be achieved in order to improve health service delivery in terms of responding to the specific needs of young adults.

Moving forward, we want to extend our young adult panel to the east coast, but in order to do this we need your help. If you are 18-25 years old living with Type 1 Diabetes and interested in having a say please join us at our next D1 Now information evening at the Psychological Society of Ireland office in Dublin on March 14th @6pm. If you can’t make it, feel free to contact us via Twitter, Facebook or email.

The D1 Now team are funded through the Health Research Board's Definitive Interventions and Feasibility Awards grant.

Website: www.d1now.ie Twitter: @d1now.ie Facebook: D1 Now