I often hear people sharing that when they were diagnosed with type 1 diabetes, their doctors sometimes (often) told them a rather specific time-frame for a cure - in the next 5 years, in the next 10 years....it surprises me, as I was never told anything of the sorts. "Diabetes is a life-long chronic disease, and that's that" was the message pretty much.

Maybe I did not have the most optimistic doctor...but I wonder what is worse - given hope for a cure that is not met, or not being told anything at all?

What did your doctor say when you were diagnosed?

Tags: 1, cure, diabetes, industry, research, type

Views: 1149

Reply to This

Replies to This Discussion

I was diagnosed in 1989 at 10-months-old. I remember being 7-years-old and my doctors telling me by the time I'm a teenager there will be a cure. I'm 23 now. BS.

Seems like my docs were not optomistic. I was told that I would have to use insulin for the rest of my life

it seems impossible unless a cure is through prevention. it's an autoimmune disease and part of our bodies are destroyed. i know a few folks that have under gone islet transplantation and i hardley consider that a cure. in the same sense that a heart transplant is not a cure for heart disease. it may some day increase the quality of our lives but a cure?

That is how the world sadly works, you need to keep things calm so that you can control people and society. Imagine they would have told you the truth, yeah we really dont care about a cure, that would not generate any cash flow.

To contain a p***ed-of society who need to tell them a purpose and a why, so this is why they usually tell is genetic from you parents or grandparents or a bad gene you have, now imagine that they told you: it bad food you are eating all those chemicals in meds, food and pollution. You would go out there and protests and create a big damage to those flow cash industries and politics too.

I wasn't told anything about a cure, but then no one was taking my emotions or view of the future seriously anyway. It was just "here, take this pill and follow this meal plan" and that was it. Well, the pill didn't work, and the meal plan was unbearable anyway, so I kind of stopped paying attention. I was focused on getting the doc to put me on insulin, which worked like a charm as soon as I got the proper regimen, and then getting him to prescribe me a pump, which he was very resistant to at first. So I wasn't really focused on a cure, because I was more focused on staying alive. And I am still not really optimistic about a cure any time soon, because to me a cure means having a normally functioning pancreas just like everyone else. An artificial pancreas doesn't fit the definition of cure for me, and by the time they really come up with a commercially viable one, they'll probably tell me I'm too old anyway!

In 1989 I recieved there will be the "there will be a cure in 5 years" mantra when I was diagnosed. I find it interesting that the doctors involved in diagnosis are the ones often saying "5 years", but endos or the ones treating us for the long haul are not othen making these comments.

I am guessing here. It must have been in the mid? - late? 1970s or early 1980s that JDRF held a meeting, and we all attended, in Chicago, presenting a researcher who was going to be transplanting islet cells within 5 years.
So it wasn't a primary care provider who said this. It was a physician-researcher at a meeting. I didn't take hope from him. I took away from the meeting that the researcher didn't seem to be expecting problems that could be forthcoming, and I wondered how that could be, since unforeseen problems always came my way when I was conducting research. They are always around a corner in research.
My doctor looked at it as chronic-for-a-lifetime and expressed to my husband, as brother physician, that my life expectancy was going to be short, that it had been in my system for probably 10-15 years already, and that complications were already started! Of course, when 2 physicians are together, they don't necessarily speak to the patient.

I was never told about a cure but I was told over and over again about kidney failure, going blind, and body parts removed. At nine years young that is not what a child should hear. My attitude was FU. I hate most endo's. I think most of them are a bunch of scum-bags. Moving forward I believe a better treatment is within reach, The problem might more more politics and financial though. If I have to keep living with this and like this I will probably not live much longer anyway. In the last year I've nearly died two dozen times from severe low sugar in my sleep. Once my folks pass away its basically the end for me. In all honestly I can't say I am not afraid to die but this to me is nothing but suffering and I think once I'm gone I will be in a much better place. Though diabetes comepletely ruined my life in the end I will be relieved of it one way or another. Death really can't come fast enough.

I think this attitude can be a self - fulfilling prophecy. Being T1 sucks. We've all been through tough times. Going into shock every other night probably doesn't help. I try not to go to sleep under 150.

It sounds like you need to make some changes. Not diabetes related. It doesn't help feeling sorry for yourself. You can't expect life to be fair.

When I took my Minnesota Medical Bio-Medicine Board Exam, I got this question:

16 yo, male, type 1 diabetic diagnosed at age 3, comes into your clinic for treatment and diabetic management, what do you tell him? The correct answer was, If you don't manage your bg, you are going to go blind, lose your limbs, kidney failure, and DIE.

Last year at my annual eye appointment, after the eye exam, the Dr. said, well no sign of 'diabetes' in your eyes, I am surprised though, considering your age and how many years you have had diabetes, so let me tell you... if you don't manage your bg, you will go blind, lose your limbs, kidney failure and DIE. I said, WOW, I never knew that!

There should be a fund, for every time some Dumb Doctor tells a diabetic patient that they are going to "go blind, lose limbs, have kidney failure, and/or DIE" I'd say the fund should go toward Diabetic Research, but it should go to Diabetic Education, and Retraining Doctors on how to speak to patients, and provide better medical care. Reciting the Your Gonna Die Diabetic Mantra at patients, is ridiculous! Of course, these are the Doctors that wrote excellent essays in school, and got straight A's for being excellent parrots and learning how to recite and repeat. This imaginary 16 diabetic boy that comes into my clinic has already heard this song-and-dance a bizzilion times, I would not repeat it to him! But, I selected the 'so-called correct' answer on the exam, so I could get my licence to practice medicine. Knowing the right answer to the True test... will be coming when the actual Real Life 16 year old Diabetic boy comes into my clinic. I'll probably break all the rules, and hug this kid, cry with this kid, wipe away the tears - tongue please, pulse please, table, needles - calm shen (heart,spirit,mind), activate will to live, tonify kidney, nourish spleen,heart,soothe flow of liver qi, clear heat, drain damp... regenerate islet cells, whatever the pattern calls for.

It is not so much a self-fulfilling prophecy, as it is a personal problem vs. a social issue... stop blaming the victim, and don't be a victim.

Everything is diabetes related, and Nothing is. Everyone is either diabetic or related to a diabetic, we have an epidemic here, fear tactics are not solutions to the problem, we can't fix this on the same level it started, that is very key in strategy with acupuncture and herbs, and psychology/sociology of diabetic care.

Life is Fair, it is very very very Fair! And the fair comes in August, when the corn is taller than me.

Damnit, I can't help but feel so freaking Sorry for myself.

"Absolute sincerity and honest. Doctors and nurses should treat diabetic patients with sincere and deep feelings in much the same way that they treat their own family members, being considerate all the time and showing utmost solicitude, because when one is sick, he tends to feel lonely, depressed, worried and sad, and has an urgent need for warm care from his family, relatives, and especially from medical workers. Every doctor and nurse should therefore, treat diabetic patients enthusiastically, showing concern, understanding and sympathy for them. Only in this way can they enjoy the trust of their patients, who will in turn build up confidence to overcome the disease and cooperate well with medical workers during their treatments." Non-Pharmocotherapies for Diabetes, Cheng Yichun, translators - Zhang Yuxi, and Lu Yubin

Gary, sounds like you may have hypoglycemia insensitivity. That super sucks, and I relate. This qualifies you for islet cell transplant. Gary, I am sorry to say, please be very very very afraid of death, it is the only thing that tempers spirit, find something in life worth living for, and know that, that does not even matter, but it can be fun

Much Love,
Turtle Dove

I remember talking with my former and now retired PCP, who believed that a cure was just around the corner. that must have been fifteen or twenty years ago. Personally, I don't think I will see it in my lifetime.

The thing that gets me is most diabetics think a cure is never gonna happen yet the JDRF and other organizations are still in business and getting enormous donations. If people think its a fraud then why the hell keep donating money? It's not just diabetes, its all diseases. It's really is a sick world we live in to think that a human being would prefer mankind to suffer greatly because of greed/profit. Still no one can actually prove that is why we don't have a cure but from the outside looking in it sure does seem that way. The only people that are in the know so to speak if something better may be on the horizon are the research groups doing the studies. Of course until human studies take place its all just speculation of what may or may not work. My only faith at this point is Viacyte. Maybe with just a little bit of luck their formulation will do the trick

RSS

Advertisement



REsources

From the Diabetes Hands Foundation blog...

Meet The 2014 Big Blue Test Grant Recipients

  This year Diabetes Hands Foundation has pledged US$35,000 in Big Blue Test grants, continuing its support for programs aimed at providing lifesaving supplies, medical tests, treatment, and patient education to people living in need who have or at risk Read on! →

Kim Vlasnik: The Patient Voice

  Kim Vlasnik, you NAILED it! In this video, Kim Vlasnik takes our breath away as she describes what its like to be a person with diabetes. Fortunately, Stanford’s Medicine-X Conference gives ePatients, like Kim, a chance to speak since we carry the Read on! →

Diabetes Hands Foundation Team

DHF TEAM

Manny Hernandez
(Co-Founder, Editor, has LADA)

Emily Coles
(Head of Communities, has type 1)

Mila Ferrer
(EsTuDiabetes Community Manager, mother of a child with type 1)

Mike Lawson
(Head of Experience, has type 1)

Corinna Cornejo
(Development Manager, has type 2)

Desiree Johnson  (Administrative and Programs Assistant, has type 1)

DHF VOLUNTEERS


Lead Administrator

Brian (bsc) (has type 1)


Administrators

Lorraine (mother of type 1)
Marie B (has type 1)

DanP (has Type 1)

Gary (has type 2)

David (has type 2)

 

LIKE us on Facebook

Spread the word

Loading…

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information: verify here.

© 2014   A community of people touched by diabetes, run by the Diabetes Hands Foundation.

Badges  |  Contact Us  |  Terms of Service