I agree a cure would be awesome. Theres so many different things to look at with diabetes and food seems to play a big part in it. eating rite exercising ect. I have my theorys on diabetes and why it seems to be on the rise but I'm no scientist. It angers me to see people die because they simply dont have what they need to take on such a desease. It seems harder for people to get medicaid with no income. My son is 21 and going to college to better himself and on temporary leave this symester do to the DKA and neuropothy from the near death experience.Theres so many people out there just like him trying to make a future and have this stumbling block in the way. Not working since he was in school to work toward a good job so he could get insurence one day after schooling. Now he's fighting to get any help from social security just to keep living with this and trying to understand what is now going on with his body and legs/feet. I fought to get him in a free clinic but its not a simple call when you have a problem and bring him in to get it straight. I try to advocate for him and try to teach him without being a over annoying mother. He's only been married almost 3 months and this is tough on him and his wife. We thought we had his type 2 undercontrol than he got sick and we were told he's type 1 and came hours from death a monthafter he got married. if he had insurance he could get a handle on this with the help of a regular endo. I dont know if my son will be turned down the first attempt for medicaid ect but let one more person at a hopspital tell me they dont think he is eligible unless he looses a limb or goes blind. What is wrong with these people. I wish there was a advocate were my son lives to help me help him. my son is in constant pain in his feet since a week after he came home on insulin from the DKA. Went back to the hospital 3 weeks later to be told he was still dehydrated and ingnored my sons wife when she asked if it could be neuropothy. 2 days later back to the ER with me this time in Richmond va figured I would deffinantly get help for him there. John Barely walking into ER sat there from 8 to 12:30 before they took him back and would not let us come back with him. Tried to get back to him several times and after 2 and a half hours he came out with 2 scripts and in a lot of pain they wouldnt even give him somthing while back in the back. I feel like we were treated this way for lack of insurence. I dont know anything about what my sons body is going through and you'd think a hospital would care about the person not the money. How many people would give there life to find a cure even if they didnt get a dime for it! I can fight to help those around me with it get what they need to manage it but since money talks I'm silenced when it comes to a cure. Anyone in the Lynchburg VA area let me know. Looking for friends that share this in common. Thanks for the ear. Kimberly
"Curism"! Excellent word! I'm stealing it! Or, at least, going to use it.
hi MossDog
There is no question it would be hard to get the cure to everyone in a reasonable time-frame - especially considering we don't even know what a cure would look like. There have been deadly diseases, however, which have virtually been wiped out from all corners of the Earth in the 20th century, so we should not give up hope on that one. Furthermore, I think the issue is that if it will be hard getting them a cure, a full lifetime of supplies, treatments, and care for any possible complications will be, and is, that much more difficult.
Moving away from global issues, I would also like to clarify that no one at the JDCA is against patients getting proper treatments and being cared for. Of course, that is vitally important. We are not advocating that the JDRF and other organizations should abandon all other causes and focus all of their funds strictly on a cure. However, our research shows that diabetes treatments are indeed well funded, much more so than research into a type 1 cure, and a lot of that money is coming directly from fundraisers who focus specifically on a cure, not treatments. We are not against fundraiser money for treatments going into their allocated place - but then, fundraisers focused on a cure should also respect the wishes of their donors. There seems to be little point in donating for something if that money will be spread apart and used elsewhere, which is what discourages some others from donating. Honesty is important.
On a personal note, I am quite familiar with these frustrations. I am 23, and because I technically am on international status I only have partial insurance of sorts. It does not cover everything, and my full-time job does not offer medical. It's tough and it puts a strain on your pocket. Not to mention how much tougher it would get if I developed a diabetes complication...
I know I truly hope I am not dealing with the same issue 10, or 20 years down the road, and that my younger brothers avoid the issue all together and never have to deal with diabetes.
We need to keep hoping and pushing for a cure IMO...there are talented people working for one in the research labs, and they need all the help we can get them.
I guess these posts project a level of complete mistrust of JDRF that it is almost a compulsion on my behalf to defend them and what they are trying to do. I guess in a way it almost "feels" like these posts are intended to get people to specifically mistrust JDRF and what they are trying to do. Not at all saying that is yours or anyones for that matter intent just what it feels like ***to me***
If JDRF allowed you to dictate how your money is used would the distrust towards JDRF you feel be gone?
You mention treatments are well funded and curative research is not. Do you have any data on that? Would be interested in seeing how that breaks out. There is also a good reason for that. Treatments are more likely to give a ROI in the short term vs ROI in the long term with a cure. Most people doling out money are looking for a ROI in the short term including those donating to JDRF- their hope being that a cure happens soon. In fact I think it would be interesting to poll people who donate to JDRF on what they think the focus should be on. I think you are getting rather biased opinions by asking PWD. Who knows maybe those donating to JDRF will be of the same opinion as you?
Kimberly, I think your son’s experience with the ER was more because he was in pain than his lack of insurance. ER’s are not really setup to help diagnose people. If he had walked in there with a knife stuck in him or gushing blood from a cut, they would have helped him. They get a lot of people that claiming to be in pain coming thru trying to get pain pills. I am not saying your son did that – I have neuropathy and understand how painful it is. A guy on another health board went to the ER in pain. He said his wife had to practically carry him in. He did have insurance and he was told to call his family doctor on Monday and sent home with nothing.
Have you joined the neuropathy board here? You can get some good tips there.
Havent found that yet. I understand about the ER. We didnt even know for sure what john had at the time but were hoping they would admit him that night so we could figure it out but really got very little help. He's so young. can the nerves heal? I cant imagine him living like this. I dont see him having a easy life if things dont get better. hasn't driven a car since September when all this happened. Hospitals work with you on bills doctors will send a bill and exspect it paid ect. I sure hope life gets brighter soon for him. thanks kimberly
Here is the link to the neuropathy group:
http://www.tudiabetes.org/group/neuropathy
The guy on the other board thought he would get admitted to and they just sent him home.
Yes, nerves can heal. Mine hasn't yet, but I am not giving up hope for that! I haven't driven since June, 2005 so know how frustrating that is.
If he can get his BS in good control, he will have a good chance of his nerves healing. The books Using Insulin by John Walsh or Think Like a Pancreas are a big help. Get some Alpha Lipoic Acid. That is an OTC vitamin/supplement. He should take 200 mg 3 times a day. That is one of the best things to use to heal nerves. They say the R-ALA is better. I just the regular ALA because the R is too expensive. A good B-complex will also help with the pain. That did wonders for me.
He's on Gabapintin and Tramodol. probable spelled that wrong but he has the bottles and we are almost 4 hours apart. thanks for the emotional support you give. helps a mother have hope.
I have heard of the G one but not the T - don't know how to spell it either. I hope everything works out for him!
Tramadol is a pain med usually used for people who will need it long-term.
Thanks Jrtpup!
I have to say that like many here, I welcome the changes being made @ JDRF. I think it represents a more realistic view of what it means to live with the disease AND find a cure. It is highly unlikely that a single "cure" is going to be found that will address those at risk, those who have just been diagnosed and those who have had the disease for years.
It is also NOT "new" news. I like the new logo much better than the old, and actually hope the subtle "T1D" gets bolder as time goes by.
As I have written in the past, I think the JDCA could approach their mission from a wholly positive perspective, and I wish you would look into that while refraining from negative attacks and writing attacking opinion pieces thinly disguised as "articles". When I see the JCDA's anger expressed in this way, it saddens me. I hope you will take the time to investigate other ways to accomplish your mission.
I very much support the change in direction by JDRF as well as their rebranding. As a 35-year-old who was diagnosed with Type 1 diabetes only 8 months ago, I applaud JDRF's mission to reduce/remove the term "Juvenile" from their logo & emphasize "Type 1." The term Juvenile Diabetes is simply misleading (not to mention outdated). I am also supportive of their decision to devote 50% of their funding to research seeking to improve T1 treatments. Since my diagnosis I have been simultaneously grateful for the treatment gains that have been made in the last 20 years (or so) and dismayed by how much work is still required to manage this disease. Funneling research money into treatment development will likely result in big gains in a relatively short period of time. In addition, by devoting a larger portion of their advocacy efforts to pressuring the FDA to increase speed of their device approval process, JDRF would be indirectly encouraging private companies to develop improved treatment technology at a much faster rate.
I think a cure is certainly the ultimate goal, but treatment research often generates insight into new directions for research targeting a cure - so the two are not mutually exclusive. Right now however, we know so little about how this disease develops; and the more we learn, the more we recognize how little we know. So any message that a cure is "just around the corner" is misleading...no matter how much money (reasonably speaking) is spent on cure-focused research.
Giving credit where credit is due, diabetes researchers do seem to have become quite adept at curing Type 1 in mice. So, these days if you're a non-obese diabetic/type 1 mouse, you've got your choice of cures - must be nice! But none of the mouse trials have translated successfully into a cure for humans, and few have even resulted in forward movement toward a human T1 cure. That said, I am currently participating in a clinical trial funded by JDRF studying a treatment seeking to stop beta cell destruction and extend the honeymoon period indefinitely. So far this treatment has done wonders for the mice. Who knows, maybe this is the time when the treatment does wonders for the humans too!
I agree with most everyone here that there needs to be a balance. Since so little is known about what exactly goes wrong with the immune system in Type 1 and a lot of other autoimmune diseases, it's foolish to put all your eggs in one basket. The cure will not be found until all the pieces are in place, and no one knows when that will be. Meanwhile, people are suffering and dying from Type 1 (and Type 2). I'm glad to see that JDRF is starting to acknowledge the existence of adults with T1 and the fact that they need to be enabled to live a better quality of life NOW -- maybe they can't wait for a cure! I was never motivated to give money to JDRF as long as their emphasis was on children and a cure, but with the refocusing, I may have a change of heart. Heaven only knows *I* won't live to see a cure, but I sure am interested in a better quality of life.
To address the concerns with the JDCA's position on the JDRF changing their name: We certainly recognize that many people with type 1 were diagnosed as adults. I was diagnosed at 18 years of age, and Drew and Nick are also two adults living with type 1.
However, there are are also many children with the condition, and the disease really can strike anyone. We believe that the focus of the foundations should be reorganizing their structure so that the donations they receive for a cure go towards that source, instead of arguing the semantics of the disease.
If anything, the word "Juvenile" offers a sense of urgency that is not present in the more general "Type 1" term.
Huh?
I don't follow the logic presented here, Stoyan. If you don't want to argue semantics, then why object to the change?
From my adult perspective, I do not see how "juvenile" creates a sense of urgency, but I DO see how "juvenile" creates a lot of confusion. I may not whole-heartedly agree with T1, but it does seem to be gaining a little traction. This change allows me to avoid a whole discussion about having/not having diabetes as a child, and re-focus on my "type" that I deal with every day.
Anyone that's had diabetes for at least six months knows what they are up against. It's not a new revelation. There is only a certain amount of control we have over the numbers and nothing is gonna change that except a superior treatment or cure. Maybe the JDRF had no idea how complicated curing diabetes would be and seeing studies that have gone into the phase three over the last few months have come up short they are re-evaluating whether diabetes is really even curable. On the other hand not supporting Dr Faustman is a slap in the face to the community IMO. Yeah its a long shot but most potential therapies are. Meanwhile its entering phase 2 human studies and has shown signs of natural insulin production in patients. In the end if they are not using the money or very little money to fund potential cures then what the hell do we really need them for? I gave to them once or twice but these days it all goes to Dr Faustman.
Gary,
Good for you! I fully support giving to the charities that you think are the most worthy. I certainly hope that Dr. Faustman is on to something. Like you, I contributed to JDRF for years, but I don't currently for my own reasons.
That said, I do believe the JDRF is funding valuable research. They are NOT the perfect organization by any stretch, but I feel the JDCA is trying to discredit everything the JDRF does by painting them with too broad a brush. I object to these tactics AND the overall strategy.