Top 5 Takeaways from DAFNE

Hi all. I am an American writer working on a piece for JDRF about the DAFNE program. I would love to hear your thoughts about the most important things you learned from attending DAFNE. It could be as broad as "talking to others with diabetes about living with it really helped" or as specific as "I learned how to adjust my insulin dose for pizza." Really, whatever significant learnings you applied to your life after attending the program. I'll be compiling a top 5 list, so feel free to contribute as many or as few as you'd like!

I also started a thread asking for "your story" about attending DAFNE. While that piece is fairly complete, you should feel free to visit that as well. And feel free to private message my inbox here if you'd rather share that way.

Thanks so much for allowing me to learn more about DAFNE and your experiences!

Best,
Paula
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Paula Ford-Martin
www.wordcrafts.com

My top five are to do with the relationships between insulin demand (by your system), insulin demand from the different types of food and the times of action of the different types of insulin. Dafne answered so many questions and gave me a lot of freedom. Previously I had been on 5 injections: two morning and night (6:00am and 6:00pm - long acting) and three linked to meals (6:00am, noon and 6:00pm) and no food in between. Both the long acting were the same number of units and breakfast, lunch and dinner were all the same,,,very rigid!

When I first asked my endocrinologist if I could (literally would he refer me) do DAFNE he said that I would not like it as it required a lot of attention to detail. He did not refer me but I managed to talk myself into a course and when I went back and announced that I had learnt a lot he was amused! For the first time I learnt that as far as possible I was in control. Helen

DAFNE gives so much knowleadge. Sick day rules, controlling diabetes by carbohydrate intake calculations, how to cope with exercise and by giving people the confidence to feel that they can contol their condition.
The downside is that with the fullness of time, some people find out that they are very different to the norm and DAFNE principals do not cover them and they are back to sorting out their own condition.

It sounds as though you have given up on DAFNE Vic!...

I believe you are far from getting the best out of DAFNE. You are on a single dose of Lantus, this could be split, you could try Levemir. All these angles need to be explored first before giving up.....but I sense a reluctance.....the background dose as we all know is the foundation of the insulin regime....I think you would agree that your foundation is not structurally sound yet....

For me the top 5 would be:

1. Basic understanding of the carb/insulin relationship.
2. The thirst to learn more about my own condition and others.
3. Sick day rules.
4. A much more structured routine when it comes to eating, testing, which comes easy.
5. Acknowledging that I will never be able to control it perfectly, no one will, but that I should focus on the important things in life and enjoy them, try to balance out controlling blood sugars and living life....

Sorry Novorapidboi but you couldn't be further from the truth. Having completed and enjoyed the course some 3 years ago, I have worked tirelessly to try and follow the general principal and thus improve my control. I have tested my blood at least 4 times everyday (would have done more if the doc would prescribe enough strips), weighed out food, done endless calculations to try and fit injections to what I am eating, have regularly attended clinics, been an active member of this site, all of which I still do. So no I have not given up.
However DAFNE in my experience is not a one size fits all solution to every type1 diabetic. My Hb1ac has never improved since the course, I have suffered far more hyops than ever before and my control is no better than before the course.
If DAFNE were perfect, we would all get green results every time we tested, yet that is not the case for many. In fact in 3 years I have never experienced a completely green day, have you?
You are correct in thinking that I am not happy with what has gone on. If Levemir is so much better, why have my diabetic team never mentioned moving over to it? Their job is to help improve my control. I do not believe that my problem is the background as I know that by taking a certain amount, I will be in the right area yet if I increase it by 2 units, I will be hypo all over the place.
Sorry to sound negative but your opening sentence sounded like every person I have sat across a desk from who tells me "if you improve your control, you will feel better".

Post DAFNE, I have yet to meet an HCP that knows more than me with regards to my control. DAFNE taught me about the different insulins and I made decisions on what I thought I needed.....

You don't have to wait for them to tell you to go on it....

I didn't mean to upset though.....DAFNE isn't a fix for anyone directly..., each individual needs to tweak for their own needs.....as you know......the people that teach it don't say it's a quick fix, still requires hard work on our part.....

I was diagnosed age 5, back in 1990. I did DAFNE in May 2009.

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My top 5 significant lessons:

1) I have been given a lot more solid information to give to anyone who wants to help me as a Type 1 Diabetic.

Knowledge is a very powerful thing when used right and not generalised.

Be it my workplace, GP surgery, a friend or a loved one, having the DAFNE knowledge and guidebook has given me the opportunity and confidence to explain how I care for myself a lot better than ever before - and in turn, more confidence in say, a loved one taking care of me when I'm vulnerable because they are also DAFNE educated and understand my needs to a similar level to me.

The best example I can give of this is my fiance. He cares about me very much clearly and I genuinely feel that him also learning the DAFNE rules has strengthen our relationship as a result. It is very common for a loved one, including parents, to be completely frustrated by the fact they don't understand the suffering of someone they love and this is often amplified by fear of the unknown. DAFNE has removed a lot of the frustration from this and has made me as a diabetic person a lot more understandable. He even carb counts for me sometimes!

On a related note: A bonus is it is also possible to help a fellow graduate who has lost their way. DAFNE rules give a base to work from and provides information found from at least a decade of research. It makes me quite sad that across the world diabetics have to gain this knowledge alone. Having any kind of course is a very good thing for the majority; though pride can get in the way for some.

Speaking of pride, it does get kind of embarrassing how much personal information may need to be disclosed for some situations (like some forms of exercise, for example *cough,cough*)... this can make it awkward to want to ask for help(!).

2) I understand what my body is trying to tell me now.

Before DAFNE, I used to correct before giving my body a chance to use up the insulin I took from a meal. I would "boomerang" - where I'd correct, hypo, panic eat, go high, panic correct... etc - frequently and I would never learn from it. I see many others admit doing this and having no patience to let their body use the things they give it. Patience is a very valuable thing.

My control is so much better now since DAFNE (as in it's a lot more stable) and I actually understand what the hell is going on as soon as I learnt to work with my body and not resort to self-depreciation because I was high or low. I can use the tool that is insulin a lot more effectively. I can understand what my body is trying to tell me ten fold. DAFNE gave me a lot of confidence back.

3) After 19 years of being diabetic, I was finally introduced to key carb counting information.

In the past, I would pull dose numbers "out of my butt" after just looking at food, because I did not know about carb counting AT ALL. It was never even suggested to me, until I did DAFNE. I was told to "work it out myself" pretty much. Shortly before DAFNE I used to say to myself things like "If I'm 12, I'll take 2 units" or "I'm 13, I'll take 3 units".

I can see now just how dangerous that logic was but I did not have base knowledge to work with because I was taught about "eating for my insulin" and not the other way around which DAFNE teaches. Adjusting your insulin for what you eat instead of eating for it is so much better for all. It's a shame this was not realised sooner.

4) I don't have to be afraid to live my life.

When I was fairly young (early teens, I had been diabetic about 5-8 years by this point), I made a few decisions:
1. I was never going to drive (because it'll be too dangerous due to hypo potential).
2. I was probably never going to be a Mom (because I had no faith in my control, I don't think I could be a good full-time mom and I didn't want to have to have cesarean section due to baby big-ness).
3. I didn't care if I never got married.
4. I was going to live for happiness!

Since DAFNE, it's been a bit of a mental rewiring thing:
1. I passed my driving test last year.
2. I'm engaged.
3. .. well how I think has started to change generally. I used to live in fear and having to challenge a lot of my feelings has been an emotional experience.

Still no plans to be a mom though, but my reasons aren't exactly the same any more. If I want one, I'll go for it probably now. ;P Shall see!

5) More respect for ketones and a better routine in place for illness.

Misunderstood knowledge or taken at face value advice is a very dangerous thing. An education based on opinion is not a good education.
There is a very good reason why this site expects you to register your place of doing the course to then allow you access to the online guidelines - some of them can be potentially very dangerous and one of these is the sickday rules.

My respect for ketones was very poor pre-DAFNE. I would not take my ketone urine sticks stock too seriously. If my ketone levels were high, it was time to consider a trip to the hospital. Post-DAFNE, I can now prevent myself from going into hospital. I can get those excessive ketone levels down myself using the rules.

The last time I went into hospital wasn't because of ketones or my diabetes (my levels were lovely) - it was dehydration alone from not being able to keep fluids down. Definitely would have been a very different story pre-DAFNE.

Thanks everyone...great input!

Hi again all. I am inboxing some of you separately for your approval on quoting you in an article sidebar (Top 5 Takeaways from DAFNE). Thanks again for your input!

Best,
Paula