Replies to This Discussion

Permalink Reply by Kelly WPA on November 17, 2011 at 3:51pm

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.

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Permalink Reply by angelic 1 on November 17, 2011 at 4:09pm

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

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Permalink Reply by Kelly WPA on November 17, 2011 at 4:15pm

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.

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Permalink Reply by angelic 1 on November 17, 2011 at 5:01pm

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.

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Permalink Reply by Kelly WPA on November 17, 2011 at 5:33pm

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!

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Permalink Reply by jrtpup on November 17, 2011 at 6:20pm

Tramadol is a pain med usually used for people who will need it long-term.

Permalink Reply by Kelly WPA on November 17, 2011 at 6:22pm

Thanks Jrtpup!

Permalink Reply by Mike Ratrie on November 17, 2011 at 10:27pm

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.

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Permalink Reply by Mary R on November 17, 2011 at 11:03pm

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!

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Permalink Reply by Zo Zo on November 18, 2011 at 3:06pm

Personally I am happy/not bothered with the rebranding, as others have said, we've lived through "it'll come in the next 10 years" with only advancements but no cures. So it is important that they show they are improving lives, they have part research in cures and part research in advancements. If i'm completely honest, given the amount of money the drugs companies get for diabetes treatments, it wouldn't surprise me if they do an under hand job where any research that is positive is stopped before it can be released. I've heard it happen with a different medical condition when I did a nursing course.
If it leads to helping people with diabetes, I have no worries

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Permalink Reply by Natalie ._c- on November 19, 2011 at 9:23pm

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.

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Permalink Reply by Stoyan on November 22, 2011 at 9:06am

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.

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