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[IP] Re: ever heard of this? (family history for type 1's)

On Wednesday, November 26, 2003, at 10:56  PM, insulin-pumpers-digest 

> Date: Wed, 26 Nov 2003 17:49:41 -0500
> From: "Julie Murphy" <email @ redacted>
> Subject: [IP] ever heard of this?
> My Dad has heard from some of his Vietnam buddies that the government 
> is
> giving money to people who were exposed to Agent Orange in Vietnam, or 
> their
> direct decendents, if they have medical problems because of it.  One 
> of them
> also says he has read that there is proof that diabetes can be caused 
> by
> this.  He's supposed to be sending the articles he saw it in and the 
> form
> you're supposed to send in to the government.  Both my brother and I 
> have
> type 1, and nobody else in our family for the last 4 generations has 
> had it.
> What I'm wondering is, has anyone else heard of this?   Where else 
> would I
> look to get more info?
> Julie


It's not at all surprising that you and your brother are both type one, 
despite the fact that no-one in your family has had it for four 
generations.  MOST type 1 diabetics don't have a family history of the 
disease.  Which is not surprising, given how a recessive trait works - 
you need to get a "bad" copy of the gene from your mother AND a "bad" 
copy from your father.  Did your mother and father come from the same 
family?  Probably not!  Most people with these "bad" genes never know 
it - and it would never come to light unless they generated a child 
with someone else who had the same "bad" gene to pass on.  (Even with 
such an unlucky couple, each child has only a 25% chance of getting the 
bad gene from both parents).  This would happen rarely enough that it 
wouldn't seem like a family history, in most cases.

When my daughter was diagnosed, my first thought was that there was no 
type 1 diabetes in my family.  But since then, I've decided that my 
grandmother was probably type 1 - she was an adult when she started 
insulin, (in the 1940's, when they didn't differentiate between 1's and 
2's), but she was thin as a rail her entire life, and her sugars "went 
higher and lower than the hospital had ever seen for someone who 
lived".  And my husband suspects that one of his uncles, also on 
insulin for decades, and thin with astonishingly erratic sugars, may 
actually be a type 1 despite the fact that he was adult onset.  So - 
maybe there's more family history than we thought at first, after all.

More possibilities for "hidden" type 1's - if my daughter hadn't been 
diagnosed the evening she was, she would have been dead by morning.  
And if she had died, and we didn't order an autopsy (as many grieving 
parents don't), her death would probably have been written off as SIDS. 
  I wonder how much SIDS is really undiagnosed diabetes.  Anyway -  even 
though most type 1 diabetics actually don't have a family history of 
the disease, there may be more family histories out there than anyone 
thinks at first glance.

- Maria Oyaski
mom to Sigrid, dx'd @ 11 mos; pumping w/ Cozmo since 17 mos.
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