Sorry if this question has been asked...but I have not seen the answer anywhere. Not everyone with Type 1 is diagnosed at a young age (as we all know). So if the main research foundation has the word Juvenile in front of it...does that confuse the nonD community out there. Also, I degress... I kind of feel left out. HAHA. When I go to the JDRF website all I see are young kids. (I "get" that it is "juvenile" - hence the youngins.) Anyways, a crazy rant/question.
Shanno
there's been a kind of answer. it would take a LOT of money to re-brand the JDRF to make the name include those who were diagnosed later in life. In my mind, I'd rather they spend that money on research and helping people than re-branding themselves. it might just be cuz i was diagnosed when i was 6, but i don't really have a problem with the name or the fact they use kids with D to get research money.
in my experience most of the non-d community is oblivious to the JDRF except for when they fundraise or during diabetes awareness month. when most people ask me about d (if they aren't friends or family), they don't ask if i have juvenile or adult-onset..they ask if i have the kind where i need to take needles everyday for the rest of my life, or the kind where i don't but i have to eat healthy. but then there are always those people who think they know more than me about diabetes and TELL me what kind of diabetes i have, but they generally don't know about the JDRF either..or very little about it.
It annoys me slightly as well... But less so now that I've found that people who give me a blank look when I say "type 1" often understand better if I follow it up with, "as in juvenile diabetes, but adults can get it."
It was called that for ages and it's still how many people recognize the disease, so I don't have a huge problem with JDRF keeping their current name.
I was 52 at dx. When they told me type 1 use to be called juvenile diabetes, I told them it must be my little boy inside and they can take him out. LOL I think being DKA made me a little messed up.
So far, this thread has talked about juveniles and people who were adults before they were dx with T1. I represent another part of the T1 mix. I was 10 when I was dx, about 40 years before the founding of JDRF, but I am now 77. I figure that JDRF needs to include me because my dx was a typical T1 dx. In recent years I think JDRF has tried harder to include us oldtimers.
I like it as it is - I think its easier to raise money for an organization that has Juvenile in it. I would gather when the organization was founded the focus was to help children only.
I still think its easier for people to contribute to an organization that has the majority of its makeup as children.
[quote user="Tom"]
So far, this thread has talked about juveniles and people who were adults before they were dx with T1. I represent another part of the T1 mix. I was 10 when I was dx, about 40 years before the founding of JDRF, but I am now 77. I figure that JDRF needs to include me because my dx was a typical T1 dx. In recent years I think JDRF has tried harder to include us oldtimers.
[/quote]
i agree with you. they wouldn't have made this community if they weren't trying to reach out. they probably just aren't sure how to do it and still stay within their mission statement i bet.
They did manage to rebrand themselves from JDF to JDRF, but I agree that they should spend their money on T1, not rebranding. There's a focus on kids and adults anyways, I think. I remember, even back when I was first dx'ed in the early 80's, lots of adults with T1 would be involved in the events...
Maybe it's because I was dx'ed as a child that it doesn't bother me? Sorry if I'm not being sympathetic to the Keith's of Juvenation. (; (;
I have no idea how they come up with these crazy numbers, but they sure make life difficult!
have you ever considered mail order prescriptions? i get a 90day supply of all my long term stuff (like insulin, and allergy medicine)...the short term stuff like antibiotics i get at walgreens
Insurance compaines do stuff based upon random math. My doctor when she was prescribing my pump had to calculate out on the prescription blank as to how much insulin I would consume daily based upon my pumps settings. This has helped things somewhat. But if you are still doing manual injections I would make sure you have your doctor write on the prescription blank how much insulin you need on a weekly basis, so that way you can still get your 30 day supply.
This happened to me all the time but with my test strips. I test 12 times a day and if I test 15 for whatever reason it takes away from the next day's strips. If I ran out of strips before my new ones came in my insurance would have a fit. Here is how I solved my problem I had my doctor write on my prescription test up to 20 times a day. so if for whatever reason I go over they can' complain about it. Maybe if your doctor could do the same thing with your insulin you may have less of a problem. I also use Walgreen's pharmacy and just to be fair to them a few times they advanced me strips until my insurance approved the full order.
Kate - the only comment I can add is that for my son, his long-acting insulin (Levemir) is a 42 day scrip - because that is the labeled open shelf life. So our insurance won't budge on that one. (Both our pharmacist and endo confirmed this is OK - that the short actings (Novolog or Humolog) are 30 day open shelf lifes.
Good luck.
I have my endo write out exactly what I need like everyone else seems to do. I get 3 viles which usually lasts me about 90 days. I did have an incident about a month ago where the vile that I was about to use was defective. The cap of the vile, that you actually stick the needle through to draw the insulin out, was not actually crimped down around the bottle. I had to take a pair of pliers, because that was my last vile, and physically crimp it myself. And if no one has ever done this, it doesn't work out that well. My pharmacy replaced it, no questions asked.