What is YOUR thing?

Hello my friends,

I am Fabiana, I have 31 y.old and have had diabetes type 1 diabetes since I was 12.

I am gathering some information about how associations and groups for people with diabetes could help you more and I will present the results listed here to ADA because they are interested in doing more things that add more value to the community.

I will start then with what I think I could benefit from:

I would like to see Sports gatherings, like a diabetes exercise community, It would be awesome to have a group to go together for a ride, a hiking, etc. Maybe the associations could organize sports events for us!!!

And you, What is that thing that you would like to see in a shared community for people with diabetes? Anything :)


That’s a great idea! I have connected w/ a bunch of people in the “diabetics who run marathons” group here on Tu. There’s several people running Chicago but I think they are faster than I am so I dunno if we’ll connect. I saw a few insulindependence people during the race last year but didn’t make any connections w/ them or the group. I looked at their “forum” once and it didn’t seem to have a lot of traffic? The traffic is what drew me to Tu and I like the forums here and message boards in general more than blogs or facebook.

It would be fun to meet people IRL but, between work and working out and family stuff, even making dinner, etc., my time is sort of smoked?

Hi Fabiana! To be honest, I don't look to organizations to provide support and other benefits to the Type 1 Community, and the ADA would be the last organization I would appeal to! If I had anything at all to suggest to the ADA it would be to stop telling Type 1's that 180 is an acceptable pp blood sugar and that 7.0 is a perfectly good A1C!And to eat lots of carbs!

What I do look to is the Type 1 community itself: Online sites like TuD are beyond amazing and provide support and education that just wasn't available before the DOC. I also think local groups for support, advocacy and shared interests are the way to go. As you know I started a Type 1 Women's Group which has been functioning happily for nearly 2 years. From that group a social network formed which had regular potlucks (with carb counts of course!). That group also has been looked to for research subjects in the Bay Area, and for mentoring of newly diagnosed Type 1's. I've been gone from the area for 8 months now so perhaps other bonds and connections have been forged as well. The JDRF sponsored that group but it was started by me and is now maintained by 3 wonderful Type 1 women all of whom are on this board as well.

So that's what I believe in! I encourage everyone to start from the grass roots level and made contact with other Type 1's in your own areas and create meetups, social gatherings or support group. If sports gathering is your interest put the word out to your local community and make it happen. I don't deny that backing of organizations including publicity and funding can be useful to our interests, but I believe more in the power of community! We're an amazing group of people! The ADA?? Not so much! Just my opinion.

Hi Zoe!! How are you? hope all is well with you! Thank you for your ideas! It is super helpful to hear them, and yes, I agree the support group in Berkeley was/is an amazing initiative and very valuable experience.
I had a talk few weeks ago with one of the ADA new management leaders and they are quite interested in doing more meaningful things to the community, so that is why I volunteered to gather more info they could act on.... Are there other info you can offer to help them be more attuned to the community needs?

I'm good, Fabi, I hope you are too!

Personally, I don't see the ADA becoming more attuned to community needs - not in any meaningful way. Perhaps there are individuals such as the one you spoke with who are more more able to see the community of Type 1's as self-reliant and empowered, but as a whole I think that view is antithetical to the very nature of the ADA. I think the ADA is a political animal with ties to Big Pharma and the AMA. As such, I think its philosophy and purpose is corporate not community based. I'm a bit of a cynic about large and well-funded organizations in general, because I don't think they are used to seeing the individual's point of view. I do think there are local branches or representatives of national organizations (such as the JDRF branch that sponsored the women's group) that empower individuals but as a whole I think the Diabetes Community is best served by creating programs from within rather than relying on organizations like the ADA. If nothing else because I think the ADA is a strictly hierarchical organization and as such information and knowledge only flows one way: top down.Those types of organizations imho are self perpetuating and resistant to change. They have no investment in or openness to the kind of paradigm change that those of us in the DOC are creating.

You asked! LOL

If the ADA wants to add “real value” to the D community, it would do more to help diabetics access the tools they need to manage their condition. Before any social events or gatherings, priority should be made to ensure that diabetics have access to insulin, test strips, pumps, etc. As a T1, I shudder when I read stories of other T1s having trouble getting insulin or accessing enough test strips to safely monitor their blood sugar levels (see the recent post about someone’s brother who was found unconscious after being prescribed only 4 test strips per day). All this money is being spent to develop the artificial pancreas but there are still T1s who can’t access the pumps and CGMs available NOW. These are the real issues that need to be addressed.

I agree, the big issues is for a lot of people lack of test strips, access to insulins-on older insulins due to them being considerably cheaper than current insulin treatment. It's crazy that RETAIL for a box of 5 Lantus pens, it would cost me over 200 dollars and for a box of 5 Humalog pens again over 200 dollars if I did NOT have decent insurance or any insurance. Who can afford that on their own??? Pump's should be more accessible to diabetics if they choose to have them. Yes they are expensive, but in the LONG run, if they keep our blood glucose more stable, and we are in better control, the long term complicationd decrease, the incidences of hospitalizations decrease-so its really a win win for everyone in my opinion.

Hi Fabi: I miss you! Hope you are well.

I just put this same basic response in another discussion, but ADA needs to clean up its own house first. ADA has been one of the primary opponents of getting correct diagnoses for adult-onset Type 1s and including adult-onset Type 1s in the statistics for Type 1 diabetes (ADA's website still says, "diabetes is usually diagnosed in children and young adults, and was previously known as juvenile diabetes. Only 5% of people with diabetes have this form of the disease." Both statements are completely false if you include all the adult-onset Type 1s in the Type 1 category, see my blog on skewed statistics) and my Bill of Rights for people with adult-onset Type 1 diabetes.

ADA is the go-to source of information on diabetes for the media, but ADA keeps feeding the same horrible inaccuracies about Type 1 diabetes. It would be enormous value to the diabetic community to get all PWD correctly diagnosed and treated.

Strongly agree with both MBP and Christy. How can anyone justify all the dollars being spent on research and development of the artifical pancreas while so many PWD can't afford the basics for their treatment? What good will creating an artifical pancreas do for PWD who can't afford insulin and test strips? I wish a fraction of the time, attention, and money that has gone to the artificial pancreas would go to securing access to treatment for all PWD.

Even many of us with insurance are financially strapped because of the economic burden of diabetes. Stories of people rationing their insulin just to try to survive...the ADA should be all about addressing access to existing tools rather than anything else IMO.

Just thinking about the ADA's priorities and directives for us is enough to raise my blood sugar! So many valid criticisms in this forum.

I have been desperately seeking a support group specifically for Type 1 diabetics. Especially those of us who have are far into our diagnosis' (36 years) We also need information, support, advice just like the newly diagnosed and Type 2's but it's different information that we need. Everything in my area seems to focus on those newly diagnosed Type 2 diabetics. I've found one that I think might be what I'm looking for but it's over an hour drive for me. I tried starting get togethers for T1's but it kind of fizzled. I've spoken to several hospitals in my area and asked about it but they just give me blank stare.

Hi barbraann. I don't know how close you are to a large city where there is a JDRF chapter. But I tried on my own to start a Type 1 group with little response. Then I contact the JDRF chapter near me and they were very supportive in getting the information out through their network and a good sized network of Type 1 women was formed which has been meeting monthly for close to two years now. The women do very much vary from newly diagnosed to people far into their diagnosis but that combination seems to work well.

But I have to tell you that if the group you mention that is an hour drive away is anything like the amazing group I started it would be well worth the drive. At any rate, it certainly would be worth attending a couple times to see how it felt.

acidrock, Thank you for sharing your perspective with me! I am glad you run too despite the daily busyness... I will take a look on the "diabetics who run marathons" link you sent me!

Hello, Zoe! Thank you for sharing your perspective with me and sorry my delay to respond, it has been a tough week.
I see your viewpoint about big organizations being more political and corporate and not community based, and I agree that those exist. My experience with ADA was different though, maybe because as you said I met with this person who is really willing to listen to the community needs and fulfill that gap as much as they can. Creating programs within our own community is also a great initiative but if we can have the support of organizations who are willing to do more for us I think that is great.
Definitely your concerns are very respected by me though! Love, Fabi

MBP, Chirsty and smileandnod, I highly respect your views, and agree with that. I come from Brazil which is a "3rd world" country, the government lacks reliability (there are so much corruption) however every single individual with diabetes has the right of as many strips as they need to manage well their Blood Sugars. I for example get there about 10 strips/day from the government. If you do not have health insurance at least you get the basic, insulin pumps is a problem thoughm, but they give away syringes, humalog and lantus insulin which are a good treatment too... It really strucks me how come here people are in need of the BASICS...
Thank You! Fabiana

Hi Melitta!!!

I miss you too! Omg it has been a while. Planning to attend next meeting though.
This is a great, important point you made. I was not aware of that issue until I read your post. I will definitely address that concern with them, i will write kinda report with all; responses, so I will definitely include this too! Thanks! Looking forward to seeing you

Hello Aimee!!
Thank you for sharing your perspective. I think you made a great point... gatherings just with the purpose of connecting with others with diabetes (parents and kids) are in need. I miss it too.
I will address that in my report to ADA and in the mean time check out this website: http://www.dashcamp.org/, if you live around the bay area it might be interesting to your daughter. They also have financial aid available. Best luck, Fabiana

Hi Rennie,
Thank you for sharing your perspective. Do you have any suggestions of what could they do differently?

Hi Barbraan
I hear you, I also feel that the info we need in our later stages living with diabetes is different, and it deserves a special forum.
I took part of Zoe's group a couple times and it was really great to be with other women in the room who really gets it. I will def address your suggestion! Very Best, Fabiana