I'm in Oz...and have been participating in a monthly drop-in pump
clinic, where I wear 3 hats: (1) health professional, (2) Type 1
Diabetes, (3) insulin pump +/- CGM user.
We're looking to modify the format to something more along the lines
of a facilitated support group that meets once a month; something that
provides a place to disseminate info, allows ppl to chat/vent/chew the
fat etc. We have a relatively good health/support service for children
with Type 1 in town, but have identified a lack of services for those
of us who are have grown up into adults since being diagnosed with Type
1 or those who are diagnosed in adulthood.
I'm sure such groups exist, and would be keen to hear from anyone
who's had any involvement in one? eg. what works well? what doesn't?
etc etc....
Feel the same way here in the central U.S. The only groups i can find are geared towards tyoe two diabetes or towards children with type one diabetes. I can't seem to find any groups out there for adult type ones or veterans like me who have had type one twenty or more years. Makes me wonder sometime if i am the only 28 year old type one diabetic left alive in Kansas City somedays.
It's the same story in the Northeast!! I am in PA and have searched myself, but there is no support for adults. Kids and teens, I guess they figure that after 20 years of T1 you should be good. That is a poor assumption.
Hi - I understand it's frustrating to want something and not find it. But, this is where you can make a change....
If you are needing this service and can't find it availalbe near you, I imagine others are wanting it to. Right? Why not call your local JDRF or ADA or any other diabetes organization near you and see if they can help you create one. Or call them all and give them the info you have (find a place, pick a date/time, and put a simple flyer together) and ask them to post it, send it in their next mailing, or at least keep your contact info on file if someone else calls asking about it.
Now, know that these are volunteer based organizations. They won't have staff to do it for you... but they will have mailing lists they can send info about a meeting you have setup. Or they can put your meeting information/contact information on their website.
I also suggest putting a flyer together and giving it to local Endocrinolgist's offices. These days they require the to be laminated, but if you put it up... people will be interested.
I helped put one together for adults in my city. Turnout isnt' always great, but we have a list of 25 adults living with type 1 who get the emails and it does help to have someone to turn to who gets it. Needs/issues change as us "juveniles" grow up.
I guess what I'm saying - if you don't find a resource you need, instead of not acting or finding it, perhaps you could help get it setup. You benefit and others around you benefit. This is one of the "positives" in my life living with type 1.
through that I found T1's in my area, we used to meet in the city (well try at least) every few months... it fell apart after a while but im sure theres new ones, theres groups on there for everything and if theres not a group you can stat one. It was such a great experience to meet u[p have some coffee and chat, it was way before juvenation so it was the first time i was truly connected with T1's. We all went together to a comedy show about T1, it was great you laughed, cried.. awesome. If anyone is in the NY area I would totally meet up and get a group going agiain!
It is the same here in Reno. There is a support group for people with type 2 and for parents of type 1 youth, but nothing for those of us who are now adults and gone through type 1 for a large majority of our life. I think there needs to be something. The lack of a support group or just a network can be frustrating especially since I am working on my thesis and trying to find adults who had type 1 through their adolescence.