Let's hear your story!

Hello everyone. I am a freelance writer working on a feature piece about DAFNE for JDRF’s Countdown magazine. I’m looking for a few DAFNE participant stories to share in the piece. I’d greatly appreciate you sharing your experiences to help our US readers learn more about this program. You can either post to this thread or private message me. Following is an idea of what I'm looking for...you can contribute as much or as little as you'd like:

When did you take the course?

What was your favorite aspect of it? Overall impressions (good and bad)?

How was your control after completing DAFNE?

If it’s been some time since you finished DAFNE, how is your control today?

Do you use the DAFNE Online site and tools frequently? How do they help (or not)?

And anything else you think is worth sharing!

Thanks in advance for your contributions. I’m looking forward to hearing your stories!

Best,
Paula Ford-Martn

EDIT: If you'd also like to share your diagnosis date and what brought you to DAFNE (how you were doing with diabetes control before the course), I'd love to hear about that too.

Hi,

I did DAFNE at Nottingham QMC in November 2005, my reason being I was self adjusting my insulin like DAFNE without any clue really. My HbA1C was 11 ish at times which I got down to about 9 before DAFNE, after DAFNE it is now 7 ish, last one was 7.2. Sorry still do my HbA1Cs in old format I have recently found that I have been on a low carb diet pre holiday and my control is so much better I am hoping for a 6 ish in my next HbA1C

Another big reason for doing DAFNE and trying to get things under better control was I had a bad case of retinopathy, having laser on a weekly basis in both eyes, followed by an Avastin injection in one eye. Since doing DAFNE and getting better control and having the injection and laser I have gone from weekly eye checks with laser to 12 monthly checks now, as touch wood I have had no more significant growth.

Overall I think DAFNE has improved my control greatly, I can now inject and correct if needed with confidence a mistake I used to make before DAFNE was to correct high BG at any time not just at meals and would then hypo and then over correct, yo-yoing a lot.

I used to have an excel spreadsheet on my old phone before the days of the iPhone and am a software developer with the intention of developing something like the DAFNE Online app, but too lazy in my spare time to get round too it! I think the iPhone app is a great thing and big improvement over my excel spreadsheet, I use the app for every blood test and injection, between 5 and 10 a day depending on exercise and hypos.

Further to the app I have found this forum invaluable for support and having had diabetes for over 25 years and try to pass on anything I found useful along the way.

I hope this information is what you wanted, ask me any more questions if you would like to know anything else.

Phil

Have a look at the "results" thread and you will see 3 peoples experiences.

I done DAFNE in January 2009 after unofficially following the principals under instruction from my Dietician for about a year, who at the time was pushing for people to attend the course.

Previous to this I had never heard of MDI/Basal-Bolus and was using a mixed Insulin since 1999. I would say I was in a bad way in terms of control. I had recently split from a long term relationship, was skint, and wasn't eating well, so if I didn't eat, I didn't inject. Now on MDI you can get away with this, but not mixed. I was always high and my immune system was very low, made obvious by cuts never healing and bouts of thrush....

So when I finally got on DAFNE and started learning how to control my blood sugars it literally changed my life completely. I almost instantly felt better, more energy, and got my appetite back. It was unbelievable how easy it was and that I had been missing out all this time.

I dont think I could say what my favorite aspect of the course was, I suppose if I had to choose it would be the interaction with other diabetics in the same boat as you, that really did make a difference in my opinion.

I think all type 1 diabetics should be given this course, I realize funding is an issue for some PCTs but at the very least they should be made aware of the basics. Newly diagnosed patients will get the information much easier than the older generations. Its the older generations that need to be educated as they are stuck in their ways....

I went from an HbA1c of 11.7% pre DAFNE, to an HbA1c of 8.2 post DAFNE, it really does improve things significantly. I have only managed to get down to 8% since then, this is because of weekends and I believe mid meal spiking. No doubt its many other things. But I will be going on a pump soon because of this...

It has been a few years now since DAFNE, but I would say my control has got better over time, as it takes that long to get to know your body and refine your methods and techniques that work best for you, and even when you have reached a point of good methods and techniques you still have to battle against the unpredictability of life in general, which can give you dodgy results with no explanation...

I try to visit the site on a daily basis so as to read the forum and discuss our conditions, help each other. I also have used the online diary quite a lot, however recently I have not had a lot of time to do so with work and a new baby. But the diary is very useful for record keeping, giving you a guess at your HbA1c and helping with making adjustments. Its also used a lot in the forums too when people need some fresh eyes to look for issues/solutions.

DAFNE is only the foundation to build your treatment on, but its a mighty strong one that's for sure......

Hi,
I was diagnosed as a Type 1 on Feb 2010 and did the DAFNE course in Feb 2011.
The main reason was I wanted to start a family therefore I was advised to wait a year and then do the DAFNE course.
My HbA1c's have always been good (mostly in part to the "honeymoon" period but also due to my strict regimes of always recording my test results and counting my carbs) from 6.5% to 5.2% which needs to be as low as safely possible to avoid complications during pregancy.

I loved the DAFNE course and can't praise the DAFNE and Diabetic team enough at the Southern General Hospital in Glasgow. My favourite part was meeting other Diabetics from all walks of life and hearing their stories.

My control has been excellent since the course but I've had to be stringent for my baby

I use the DAFNE online site weekly as complete my Blood Glucose Diary weekly and it's nice to read the forums and help others where I can.

I totally agree with Novorapidboi26, DAFNE should be available to all T1 Diabetics as the support and knowledge gained is invaluable but I know it's all down to money

Thouroughly recommend DAFNE and as I am in my 3rd trimester (nearly 28 wks) I can't thank the DAFNE and Daibetic team at my Hospital for all the help and support they have given to me, my husband and my upcoming wee girl

Cheers,
Anele.

Thanks to all who responded! Great input, and it is extremely helpful. :-)

I spoke with my editor today who had a few additional requests for this piece, so I'm going to start a new thread called "Top 5 Take Aways from DAFNE." Please stop by and contribute if you have more thoughts!

Best,
Paula

pfordmartin said:
Hello everyone. I am a freelance writer working on a feature piece about DAFNE for JDRF’s Countdown magazine. I’m looking for a few DAFNE participant stories to share in the piece. I’d greatly appreciate you sharing your experiences to help our US readers learn more about this program. You can either post to this thread or private message me. Following is an idea of what I'm looking for...you can contribute as much or as little as you'd like:

When did you take the course?
Hi Took the course in September of this year (2012). Have recently decided to go back to the insulin that I was on before. Had enough of the side effects - not sleeping, excessive skin loss in mouth, dry mouth, itchy skin and painful joints. Hospital wanted to change basal but I have had enough. May try again later.
What was your favorite aspect of it? Overall impressions (good and bad)?

How was your control after completing DAFNE?

If it’s been some time since you finished DAFNE, how is your control today?

Do you use the DAFNE Online site and tools frequently? How do they help (or not)?

And anything else you think is worth sharing!

Thanks in advance for your contributions. I’m looking forward to hearing your stories!

Best,
Paula Ford-Martn

EDIT: If you'd also like to share your diagnosis date and what brought you to DAFNE (how you were doing with diabetes control before the course), I'd love to hear about that too.