Moments of Wonderful

…rather than a lifetime of nothing special. A diabetes blog.

Moments of Wonderful - …rather than a lifetime of nothing special. A diabetes blog.

Promises and definitions

I was never promised a cure for my diabetes.

When I was originally misdiagnosed with type 2 diabetes, I was given medication to take and a meter to use if I got “sick or pregnant”. There was no education so there was no talk about what a life with diabetes would actually look like.

The second diagnosis came in the middle of the night. The next morning came with a breakfast tray and a syringe in my hand. I had to figure out how to give myself a shot if I wanted to eat.

I am not sure if I should blame it on my age or just bad (or good) bedside manner but I was never promised a cure. My endocrinologists always make sure that I am aware of the latest and greatest treatments, but we’ve never spent any time talking about the future.

It was not until I found the diabetes online community that I realized my situation was somewhat unique. That people with diabetes and their loved ones were promised cures from the moment they were diagnosed – 5, 10, 15, 20, 40, even 50 years ago.

I read an interesting thread on a diabetes message board a few years ago. The original post wondered if there had ever been a cure for any chronic disease. That question quickly evolved into wondering about the definition of a cure. For example, has smallpox been cured or is it better to say that because the “vaccination eliminated the chances of the virus spreading among the human population, the disease disappeared“? (source) (a similar conversation here)

I think I know what I would consider a cure for diabetes, but because it hasn’t been a central part of my life with the disease I wonder if my view is different from the rest of the community.

What would you consider a cure for diabetes? (Yes, I made a poll. I like numbers. Feel free to comment if I get the terms wrong or am missing something big. I am no scientist. See disclaimer on right.)

So what would you consider a cure for diabetes?

View Results

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I’m not trying to hype anything (#nohype for you Martin). I’m not trying to cause any additional controversy.

I am genuinely trying to figure out what the heck we are all talking about.

Category: advocacy
  • scully says:

    I’m kind of beside myself right now not knowing how to deal with this.
    Thanks for the post. This is smart and makes more sense than anything.

    March 5, 2013 at 5:57 am
  • Kathy says:

    Tomorrow is my 30th diaversary. My parents were told a cure was 5-10 years off when I was diagnosed. I don’t believe I’ll see one in my lifetime. If there is a “cure”, I will put every kid under 21 in front of me in line. If there was a solution for the worry, the what-ifs, the highs and lows and the constant drain of monitoring – that would be a miracle. Not sure science is there yet.

    March 5, 2013 at 6:23 am
  • Scott E says:

    Truthfully, I don’t remember ever being promised a cure either. I remember being told that there’s a slim chance it could go away on its own, but not to get my hopes up.

    I selected a few choices in your poll (thanks for that option!); the one that gave me the most pause was the one about immunosuppressants. I decided that – yes – a “cure” requiring immunosuppressants does count as a cure, although not one that I would personally choose if I could continue managing it the way I do today. The reason being: the condition being treated by those drugs is not diabetes. Fixing one issue might cause another, but if the “other” is not the one that we’re attempting to fix, does it count? A woman with breast cancer may have a mastectomy, and if successful, the cancer could be completely eradicated from her body. There is a lasting effect, obviously, but with the cancer gone, is she “cured”? Just something to think about.

    March 5, 2013 at 6:51 am
  • Jess says:

    I’m glad you were never promised a cure. And you’re right- it would be helpful to clarify what we mean when we say “cure.”

    March 5, 2013 at 12:07 pm
  • Josh says:

    I was told a cure was 5 years away in 1989 when I was diagnosed and have been told it was 5 years away from multiple doctors every few years or so ever since. I kind of feel like a medication ‘cash cow’ at this point.

    Curing a disease requires eradication of the disease however; anything else is still treatment. Maybe a better method of treatment to minimize complications, but anything requiring maintenance (pills/injections etc), is still just treatment. and even if type 1 diabetes is cured tomorrow, I worry that the kidney/eye and vascular damage is irreversible for those of us that have had it for so many years.

    March 5, 2013 at 1:56 pm
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  • Ginger Vieira says:

    Sara, the question you’re bringing up is such a good one! Because as I look at your list and think, “Well, no, that’s not what I would fully consider a cure…and that one isn’t either, and yada yada”…I can’t say I wouldn’t be really excited if one of those more “treatment-like” options suddenly came into our reality. That would be an awesome change from our current life of poking and prodding and reacting and guessing and hoping.

    Maybe it’s the difference between “cure” and “really life-changing form of treatment that’s different than any kind of treatment we all currently know.”

    Either way, thanks for presenting it in a calm, non-controversial light.

    March 6, 2013 at 5:26 am
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  • Christina says:

    For the record – when my first child was diagnosed I was never promised or even told that we would see a cure – not by any doctors at least. A couple well meaning people from a fundraising organization suggested once the 5-10 years but I still don’t know if that person was being completely serious.

    I was surprised by the voting results after I cast my vote. My vote was not in the top winners. A true cure IMHO would be a one time biological treatment with no additional action necessary. Maybe that’s setting the bar too high. Im not saying I wouldn’t sign my kids up for other treatments that would lesson their load but a true cure is eradication. Again IMHO.

    As far as the Hype – I came – I saw – I shrugged my shoulders and moved on. Neither announcement resulted in anger or a desire to empty my bank account to make something happen. This doesn’t mean I don’t have hope because I do, it just means I am ambivalent until I see something actually happening.

    March 12, 2013 at 7:12 pm
  • Christina says:

    oops – My vote was the top vote – I read the results wrong. That makes more sense.

    March 12, 2013 at 7:23 pm
  • Julie says:

    My daughter was just diagnosed March 10, 2013. No one has yet promised us a cure. My husband was dx 14 years ago, and I don’t recall a cure being mentioned to us then either. (Although he, like you was misdiagnosed at first too, being 34 at time of dx) One person, not sure who, perhaps a nurse during our hospital stay? Said simply, “they’re so close.” But it was a vague comment.

    I’ve certainly heard from plenty in the community since then that were promised cures: Nearly always the 5 to 10 year window. Air recently heard an endocrinologist who is herself living with type 1, speak at a diabetes camp retreat weekend. She shared many interesting areas of research that are on the horizon, all of which look promising, not all of which have funding. But I’m not counting on any of it.

    May 6, 2013 at 5:11 am

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