The VIAL Project: Helping Lee Ann Thill

Screenshot of Lee Ann's blog post

More info on the VIAL Project

Lee Ann Thill is one of my favorite people around. She is super smart and plugs into the emotional side of life with diabetes with experienced perception.  She’s been wrestling with type 1 diabetes for a long time. She get’s it.

Looking to take her smartness to the next level, she’s gone back to school (hello, Dr. Thill!). She’s already 18-months into her doctoral program and has launched a pilot study that she hopes to develop her dissertation around. The pilot study is looking at type 1 diabetes and food and body issues — something that is probably more common than we might think.

Please take a look at her post, “Type 1 Diabetes + Food & Body Issues + Social Media + Creativity = VIAL Project“, for more details and some background.

You can help by spreading the word about her pilot study, or even participating if you feel that it fits you.


Scott & Lee Ann, Ninjabetic weekend, 2010. Thanks for the pic, @saraknic!

Scott & Lee Ann, Ninjabetic weekend, 2010. Thanks for the pic, @saraknic!

Glu Survey on Type 1 Diabetes & Emotions

Today’s post is intended to help Bennet spread the word about a survey on MyGlu.  I am a supporter of what the T1D Exchange (of which Glu is a part of) is all about, and am happy to help whenever I can.

Straight from Bennet’s post:

A few days ago I wrote about research were patients were not seen as a stakeholder in research. There were some good comments and I encourage you to go read them. If researcher are part of the problem so at times maybe are patients. I think at times we don’t participate as much as we should (arguably because we don’t see the results as being to our benefit or even accessible.) We need to step up when we can. Here is place we can.  

Here is how to share your voice:

  1. Join Glu (if you haven’t already.)
  2. Scroll down to the bottom on the home page, in the glu u section click October’s Survey.
  3. Look over the terms and agree as appropriate, this is being run by real researches so yes there is a real consent process. (I think that approachable research is a good thing). Enter you password so they know it officially OK with you. 
  4. There are a number of questions each has its own page. A few of pages is a little cumbersome yes but it is a good start and an important topic. 
  5. Participate, spread eh word and help make it better.

Full disclosure. I was part of a group that offered views on how to start this process and communicate it to the DOC. I would love to see it succeed not because I had a tiny part in getting the ball rolling but because I think patients voices need to be bigger part of the research process. Here is a chance to do that. Lets all help make the effort a success so they keep doing it.

Why not parents? As I said this is being done by real researches with review boards and all that that involves. Doing research with kids, even parents sharing information about their kids is anther level of dotting I(s) and crossing T(s). It should be.  Kids deserve to  be protected with a little extra diligence. In the mean time parents of T1D kids share this with fiends in the adult T1D community OK? 


Guest Post: The DREAM Trust

I was recently contacted by Lucy, a British journalist working to spread the word about the state of diabetes abroad, especially in third world countries.  Please, read on to hear Lucy’s story.

“I wish I had AIDS, not diabetes” (girl, aged eight)

For those living with diabetes, daily life can have its challenges. When my cousin was diagnosed, aged just 5 years old, I watched the anguish my aunt and uncle went through, and are still going through, as they face the ups and downs of living with the condition.

However, it is hard to believe that 89 years after the discovery of insulin, children are still dying for lack of this life-saving drug in the developing world- and nobody knows about it.

This week there will be a UN Summit in New York to discuss Non-Communicable Diseases (cancer, diabetes and other chronic illness) in the developing world. Currently, only 2% of international aid goes towards treating them, and they are killing in their thousands.

It is this crucial international event that gave me the opportunity to see first-hand how life is for Type 1 diabetics in the developing world. I am a British journalist, and by chance, whilst on assignment I attended a seminar by the International Diabetes Federation: NCD’s, a Silent Killer. I was staggered to discover that 250,000 children are struggling to live with Type 1 diabetes in the developing world, and it is estimated that at least another 250,000 die undiagnosed.

After securing funding, I traveled to Nagpur, India’s city of oranges, to make a radio documentary- ‘The Doctor who Dreamed‘. Poverty overwhelms this industrial city, and Type 1 diabetes can be a fatal diagnosis. There is no National Health Service and unlike AIDS and Malaria medication, insulin is not freely available. The cost of insulin can cost more than one third of a family’s monthly income, and too often the logic of poverty overcomes the logic of life.

Endocrinologist Dr Sharad Pendsey established the DREAM Trust after witnessing the deaths of two young girls, whose families could no longer afford the insulin to keep them alive. I can only describe him as a ‘Father Christmas’ figure to these children, whose eyes light up when they talk about him and the clinic. He has saved the lives of around 600 children using money from his own private Type 2 clinic, and through international fundraising.

Picture of two young girls, Manisha and Shrutika, age eight, living with diabetes

Manisha & Shrutika, age eight

Without the help of the clinic, these children face an unimaginable struggle just to survive. I will share the story of Seema, whose father was an alcoholic. Her mother sobbed as she told me how she used to break one piece of bread before four children, and how her daughter went without insulin for half the month, because nobody was there to help them. Then there was Jyoti, abandoned at the doors of an orphanage, because her parents were not prepared to support her. In many cases the children face deep stigma, with others refusing to share their glasses or plates for fear of contracting diabetes themselves.

Women with the condition are worthless in a still male-dominated society, considered to be a financial burden. When 15 year old Alka developed the condition, the villagers thought that she was pregnant because her belly swelled. When her husband discovered she was diabetic, he abandoned her, leaving her to a life of shame.

Dr Pendsey’s clinic not only provides the children with medical care and counseling to overcome the obstacles they face, but also offers educational scholarships to the most needy, allowing them to escape the cycle of poverty. One patient, for me, summarizes the hope that has grown in this modest clinic. Manda dreamed of being a nurse, to support her condition and her poor and illiterate parents. Knowing that the medical school may refuse her entry on account of her diabetes, Dr Pendsey helped her switch her father’s urine for her own during the admission tests. She kept her illness a secret, rushing to the clinic at times of need and returning to class the next morning. She is now a government nurse; one of the most respected women in her society, and supporting herself and others with the condition. Dr Pendsey is proud of her- she is a DREAM girl.

It is hard for me to summarize in so few words the depth of the issues the children face, and the admiration I have for Dr Pendsey and his staff. Without their support, and those of international donors, these children would simply not be alive.

Image of Dr. Pendsey sitting at his desk at his clinic

Dr. Pendsey has saved around 600 children with type 1 diabetes

Whilst on the grand scale the UN Summit discusses the future of these and others, I want to help on the small scale. Dr Pendsey receives modest funding from individual overseas donors, taking no administration charge, and the money going directly to the children. Just $315 (£200) pays for all the medical care and insulin for a child for one year, and the donor can interact with the child through letters and drawings. $60 (£40) is the cost of a year’s schooling, and $3 (£2) buys a pot to keep insulin cool in the child’s home, in the absence of a refrigerator. I would implore anyone to give, however little, because it goes so far out there. Next time someone thinks of doing a sponsored run, or a bake-sale, make the DREAM Trust the charity of choice and help save lives.

Most of all I want to raise awareness of the plight of these children, and others like them worldwide. As a journalist, this is one small thing I can do to help.


The full documentary, ‘The Doctor who Dreamed’ can be heard at:

There is more information about the DREAM Trust at

Please contact me, Lucy Laycock, at llaycock0703 ‘at’ for more information about helping the DREAM Trust or donations.

Disclaimer: I have not personally investigated the DREAM Trust, it’s sources, it’s partners, nor the validity of their fundraising efforts.  However, I wanted to get this guest post out in time for the UN Summit, starting tomorrow morning.  Please DO YOUR OWN RESEARCH before deciding to send any money anywhere.  I am not responsible for anything beyond helping to spread the word.

TED: Ideas worth spreading – Type 1 Diabetes

Are you familiar with TED Talks?  I can’t remember how I first heard of them.  I started watching and listening to them a couple of years ago and have been really moved by a few of them.  If you haven’t seen any of them, or have never heard of them, nearly everything is available at for absolutely free.

TED is a nonprofit devoted to Ideas Worth Spreading.  Their mission?  Spreading ideas.  As they say on their website:

We believe passionately in the power of ideas to change attitudes, lives and ultimately, the world. So we’re building here a clearinghouse that offers free knowledge and inspiration from the world’s most inspired thinkers, and also a community of curious souls to engage with ideas and each other. This site, launched April 2007, is an ever-evolving work in progress, and you’re an important part of it.

I think it is so incredible to see so many brilliant people getting together and sharing ideas.  Who knows what seed might sprout from any of these sorts of talks or presentations.  The potential is often tangible.

So when Ellen shared an update about a TEDx session all about curing type 1 diabetes, I was very excited.

This is happening on October 15th, 2011 in the San Diego, CA area.  If you are local, the tickets to this daylong event are a very reasonable $100.  There will be a full day of talks by the country’s leading researchers and clinicians addressing the cause, the most advanced treatments and ultimately a cure for diabetes.

I would love to go, but I don’t have the financial resources to pay for a flight and a couple of nights in a hotel.

If you’re reading this, and would like to sponsor this underemployed type 1 diabetes blogger, please let me know.  (Hey – it’s worth a shot, right?)

Here’s a neat little video about the TEDx events.

Up the Tree and Bullies

A couple quick “tidbits” today:

1) I recently read a post on Wendy’s blog about a new blog that her mother is starting.  Wendy’s mom is looking to connect with grandparents or other extended family of those living with diabetes and/or celiac.  It got me thinking.  Those of us living with diabetes, and parents of those living with diabetes have this place to connect.  But does the desire to connect go farther up the family tree (or maybe across or down)?  Apparently it does!  Stop by her blog and share your thoughts on how you want to see that community come together.

2) Setting the record straight.  I saw this video on Kelly Kunik’s blog yesterday, and I have to say that it stirred up some emotions for me.  It is a video about young kids dealing with bullies and being taunted about their diabetes.  I don’t remember ever dealing with anything like this, so it caught me off guard to experience an emotional upsurge.  Check it out if you like (forgive me for being so American, but I totally dig their accents too!).