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A Very Inspiring Blog For Type 1 People

Discussion in 'General Discussion' started by Richard157, Jun 24, 2014.

  1. Richard157

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  2. Christopher

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    I read it and I have to be honest, it wasn't very inspiring for me. It was actually depressing reading about cases one, two, three, and four. I am not sure I believe the whole protective genes theory but even if it is true, it is only "inspiring" if you are lucky enough to be born with them. If not, things could end up being very bleak, as in cases 1-4.

    Hopefully other people on this site will find the story inspiring.
     
  3. mmgirls

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    I also would not consider it inspiring, but I have always told my girls that some smart scientist or academic or someone not even looking for a cure for TID might find it, and it might NOT be a cure for everyone with TID.

    While not "inspiring" I am hopeful and filled with hope more connections will be made and someone will figure out the key for many and not the few. But sometimes it is easier to follow the narrowest path with few branches than the most traveled and departed paths and find what makes it different to find the similarities or the vast difference. Both can shed light on the problem.

    I know I was hoping that my oldest DXed at 13 months had the "genetic" kind that could be treated with oral meds, I hoped that she was one of the few. Now I have 2 kiddos with TID and hope that they will benefit from the current research and be able to bare their own children without the thought of TID in their mind.
     
  4. Sarah Maddie's Mom

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    Richard, I have to agree with the PPs. What in the world is inspiring about that?? I saw it earlier on FB and after skimming it, shut it down. Bloody depressing is more like it.
     
  5. kiwikid

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    Depressing much? seems that no matter how hard we try, if we don't get a 'protective gene' then why bother..
     
  6. funnygrl

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    Not really. The case studies discussed with bad outcomes all had years of elevated A1c's. And that's elevated based on the old standard of 8. These are also people who didn't have access to pumps and CGMS and rapid acting insulin in their teens, when control is often difficult. One of the cases died of DKA. Once diagnosed, if monitoring appropriately and making an attempt at control it's very unlikely to die of DKA.
     
  7. sszyszkiewicz

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    Thankful for the 1. Sad for the other 4. if the protection was solely related to a genetic safety switch, life expectancy of T1D's would not be increasing. Sometimes you need to observe extremes to find a nugget of information that leads you down the road to a solution. So perhaps the inspiring part is the fact that they are on the hunt for a protective gene, or something that gene does to keep the nasties away. Having said that it was not very heart warming to read about the other 4.

    The battle continues, regardless of this blog, because it must.
     
  8. Christopher

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    Really? I didn't see that stated anywhere in the blog that was posted. Several of the cases were in their 20's and 30's so it is not like they were from the "old days" without the technology we have had in the last few decades.
     
    Last edited: Jun 25, 2014
  9. moco89

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    I don't really know what to say about this blog post.

    But, I can tell you that diabetes is a constant threat to my well being. In addition, I have a rare autoimmune disease (that was previously thought to be diabetes-related autonomic neuropathy--but it isn't), that causes autoimmune autonomic neuropathy.

    For four years, the disease I have was blamed on my diabetes. I was told as a child that if I "took care of myself that I would not have to worry about diabetes complications". That could not be farther from the truth, especially when you look at the statistics of who/who doesn't develop complications. Not only that, when you are diagnosed with a diabetes complication, you actually believe that you got the complication from "not taking care of yourself" which literally haunts you and puts an incredible amount of guilt on you. Keep in mind I was only 18 when I was misdiagnosed with diabetes-related autonomic neuropathy, and I had just started adulthood.
     
  10. Richard157

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    I called the blog inspiring because cases 1-4 involved people who did not have the knowledge that we do now. Pumps were available then, but they were not widely used. CGM's were not available, and many doctors did not know as much about type 1 as they do now. I know Christel (Case #5) very well and we have discussed this. Young people diagnosed in very recent years have the devices and they have access to the knowledge that will enable them to thrive, and live long healthy lives with type 1. There was an article several years ago that clearly stated that the life expectancy of young type 1 diabetics is almost as good as it is for non diabetics. That is true in the US, and I hope it is true in most other countries too.
     
  11. funnygrl

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    If a 30 year old was 13, that was 17 years ago or 1997. Pumps were around, but certainly not as common as they are now. CGMS was not around. Humalog was the only rapid acting insulin around, and that had just been released.
     
  12. funnygrl

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    Just re-read it. The only ages mentioned are the case study "in their 30's" so that person could have been 13 anywhere from in 1988-1997. The second age mentioned in the 28 year old that passed away. We have no idea how long ago that was. The last age mentioned is the author, was says she was born in. 1970, making her teenage years 1983-1990. I think it's safe to say we've come a long way with care since then.
     
  13. moco89

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    I do agree that both healthcare and medicine are becoming an information technology, which will benefit everyone, one way or another.

    But this is really naive, given how much you can suffer with diabetes complications, and the fact that life expectancy is not an accurate representation of a "normal life" with diabetes. We do not have enough data to *accurately* determine life expectancy of a type 1. In addition, the statistical rate of diabetes complications is startling.

    Although I do not have diabetes complications, I really do suffer from things that people with devastating diabetes complications suffer from. My diabetes control is compromised because of digestive issues and a whole array of other problems, which really makes me worry about the future.
     
  14. missmakaliasmomma

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    I personally don't see this as inspiring in any way when 80% of those patients did have issues stemming from diabetes. I don't know anyone "older" that has t1 so I can't really judge one way or the other. A girl my age has it, didn't take care of herself through those teen years and she has gastroparesis ( but I think a mild form of it, if that's possible? She takes pills I know that) She's told she won't be able to have kids, etc etc. But she has told me that her "normal" bg was around 300 and up. She said she felt the same walking around at 600 and then at 30...So, obviously not taken care of. She just recently started (about a year ago) to try to get it under control by going on a pump but her average was still around 200.

    An old neighbor of mine was dxd at 16 and while I don't talk to her often, she looks/seems pretty healthy and just gave birth to a healthy baby.

    My husband knows two guys with t1 that are in their late 20s. One wears a pump, the other is on a pen. Both are fine too.

    I guess this goes to show that all in all, it is easier to have better bgs and a1cs now with all the information and technology.
     
  15. moco89

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    I find your post incredibly offensive and judgemental. With gastroparesis, severe or not, you live with chronic nausea and vomiting due to delayed gastric emptying.

    Control of diabetes becomes extremely difficult due to the fact that food is absorbed into the bloodstream (including glucose) in the small intestines. With delayed gastric emptying this gets compromised severely, as food sits in your stomach for hours and hours.

    I often have lows in the 50s for over an hour, due to my gastroparesis, and I actually have to overtreat my lows. This person could easily have to run her blood sugar high to prevent extended lows in the 30s. Hypoglycemia unawareness is very common with autonomic neuropathy, in general.

    Keep in mind I did nothing wrong and I do have decent control and I work very hard at it. I have an autoimmune disease that caused gastroparesis. In addition, gastroparesis has been found to be twice as common in type 1s than in type 2s. In addition to that, the onset of neuropathies is different even between diabetes types.

    All in all, your post is incredibly offensive, and frankly it is none of your business what other people's blood sugars are, other than your child's.
     
  16. Sarah Maddie's Mom

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    At a minimum, one would think that being the parent of a child with Type 1 would make a person less judgmental of another's struggle with the disease. If not due to basic human empathy then at a minimum because you wouldn't want some future person talking like that about your daughter and her "control".
     
  17. Michelle'sMom

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    Thanks for sharing. I follow Christel's blog on a regular basis, but I hadn't read this post. Interesting.

    If you don't mind a personal question....have you learned anything through the Medalist studies that might explain why you've done so well? I'm familiar with a few long-time T1s who have managed to live well with few or no complications, despite the lack of tools available to us today. Is there anything in the studies thus far that speak to how common this "protective gene" might be?
     
  18. kiwikid

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    I don't think this is about technology and what young people have now. Its about their attitude and not taking care of themselves and high HBA1c's all of which led to terrible outcomes for them... Yes they do have access to the technology, but if they aren't going to look after themselves then that won't help.. I suppose this article could be good for those kids/teens who don't give a toss, as a 'scare tactic' to looking after themselves.. they would probably all think they have the protective gene though and it wouldn't change their attitude.
     
  19. moco89

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    I really think that you are stigmatizing complications. We don't go around blaming people for having cancer, yet for diabetes it's "they didn't take care of themselves".

    I mean, it's the disease. Not the person.

    In addition, there are people that get complications that shouldn't (remember, technically I was one of those people a few years ago--until I was diagnosed with a rare disease) and there are people who don't get complications who should. I am not going to cite statistics because that fuels fear, but if you were to look on your own, you could easily figure all of this out.

    Using scare tactics, regardless if the "desired outcome" is achieved is very harmful. I was told if I "took care of myself that I did not have to worry about complications". This has not been further from the truth. Not only was I diagnosed with something that looks (virtually) identical to diabetic autonomic neuropathy (but it also affects my eyes), my control has been compromised because of the autonomic problems.

    I am offended that you would imply that people with diabetes do not want to take care of themselves. It does not feel good to be high or low, at all. It is distressful. Not everyone has as good of resources (or are in as good of situations) to take care of the diabetes as other people. Accept it. Be open-minded. Don't judge.
     
  20. kiwikid

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    I HATE scare tactics - would never use them... but it is often what is suggested for teens who are in denial... I'm NOT saying all people with diabetes don't want to take care of themselves at all.. but there are some and I'm worried my daughter is heading in that direction despite technology.. Rachel has been on Lisinopril for microproteinuria, since she was 8 yrs old despite great HbA1c's ... I am the last to say you only get complications if you don't look after your Diabetes... I suppose this article hits a sore point in that my daughter obviously doesn't have the 'protective gene' ..
     

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