Replies to This Discussion

Permalink Reply by lotsofshots on June 28, 2011 at 1:12pm

I agree with that, the 'cure" sounds worse than diabetes with insulin.

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Permalink Reply by Anna Banana on June 27, 2011 at 11:31pm

i dont even remember life without diabetes

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Permalink Reply by MyBustedPancreas on June 28, 2011 at 7:26am

I couldn't resist and I actually engaged in an email exchange with the person who is building the "notypeone.com" website (still under construction). She insists that her daughter is T1D and has been "off insulin" for 3 years. However, when I suggested other diagnoses and pointed out that not everyone is a classic "autoimmune-related T1D" she would not say whether her daughter had actually been tested for these very specific forms of T1D (MODY, type 1B, and other monogenic forms can be transient and people with these types can go for years without needing exogenous insulin).

My issue with this woman is that by sharing her story in the manner in which she's sharing it, she's setting up a situation whereby parents could stumble upon her blog and video and assume that their child too can be "cured" by diet alone and no longer need insulin. It just seems incredibly irresponsible. I asked that she at least put a big disclaimed on her site explaining that it's very likely her daughter has some rare form of T1D that would not require insulin any way.

This just really bothers me because every few years some person runs around promoting some snake-oil cure without any empiracal evidence. It not only creates false hope but, IMO, puts other children in danger.

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Permalink Reply by Lauren on June 28, 2011 at 8:56am

I completely agree. There are a lot of other sub-sects of diabetes that a lot of doctors don't test for, so when someone comes up with a "miracle cure!" that is food based for type one the red flag goes up for me.

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Permalink Reply by Doris D on June 28, 2011 at 9:13am

Thanks MyBusted Pancres andLauren! That was my point long ago in this conversation b/f it turned so ugh not good.

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Permalink Reply by Natalie ._c- on June 28, 2011 at 12:46pm

As far as I've ever read, MODY never needs insulin, and responds well to oral meds. And while it is usually autosomally dominant, it CAN arise as a spontaneous mutation.

The other thing I wonder about is whether this little girl was very sick -- BGs go up in normal people when they are extremely ill, and a stupid doctor could misdiagnose it as diabetes when it really isn't.

There are more questions in this case than answers.

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