Families with Multiple Members with Type 1

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Families with Multiple Members with Type 1

A group for families that have more than one member with Type 1.

Members: 90
Latest Activity: on Friday

Just to introduce myself my name is Tracy from Tulare, CA. A proud wife and mother. My Husband is a Type 1 diabetic ( dx @ 16 months )on the Omnipod since 6/2010 and both of my sons are also type 1. Michael age 8 dx 5/2008 on the Omnipod since 1/2009 and Owen is 6 dx with type 1 and hypothyrodism 7/2008 he is also on the Omnipod since 4/2010. He was also participating in TrailNet prior to dx where he was shown to be positive for the antibodies). I started this group to get to know other families that have multiple members with type 1.

If you have a partner or spouse with type 1 diabetes, check out the online program Just for Partners, offered by Behavioral Diabetes Institute.  It's free!

Diabetes Forum

DFF(Diabetes Friend Forever)

Started by Renata Pellino-Porter Feb 18, 2010. 0 Replies

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Comment by Mrs Stone on March 19, 2012 at 9:47am

Thanks Colleen - I agree there are many things that would be a lot more difficult, I just wonder about the guilt I'd project if I did pass it along; but that's something I'll deal with IF it happens. I have a brother with down syndrome and it's true, each challenge brings a different set of circumstances. Facing the known is easier because you are more prepared. I appreciate your encouragement and support. I'm loving TuDiabetes.

Comment by Colleen on March 17, 2012 at 5:28pm

Angela,

Great words of advice from Jonna. I subscribe to the "what's the worst that could happen? And if that happened, what would you do?" camp. The worst that could happen is you have a child who is eventually diagnosed with Type 1 Diabetes. As a responsible parent you would make sure your child was tested ahead of time through TrialNet so you would know if they are going to get it. If they tested positive you would then have them tested regularly to detect it as soon as it happens (this is what we did with my daughter so she never even developed symptoms and felt sick). Then, when they are diagnosed with diabetes you would know what to do because you have it and so do your siblings. Of course, we also hope progress will be made in treating (curing??) the disease by then so it will not be the same experience you had when your were diagnosed. There are a lot worse things out there to have (we have a son who has special needs - he had a bleed at birth and we later learned he had birth defects as well - he just turned 18 and is doing well with a lot of support). I would much rather face the enemy I know than the enemy I don't. (I'm sure some famous person Tweeted that before me, ha, ha). Let's get back to you. I am so awed by your A1C of 6.1!!!! You should be proud of what you have accomplished with the technology available today. You are the ideal patient and any ob/gyn would be happy to have you because you are so compliant and diligent. I applaud you and your husband because you are thinking ahead and trying to make the right moral decision. You will make excellent parents :) Good luck to you!

Comment by SamiiiG on March 16, 2012 at 2:23pm

My sister and I are type 1 - diagnosed on the same day in 1988. We're 17 months apart.

Comment by Jonna on March 16, 2012 at 1:07pm

Glad it helped, Angela. Good luck!

Comment by Mrs Stone on March 16, 2012 at 12:00pm

Thank you for you wonderful comment Jonna - that's what I needed. :)

Comment by Jonna on March 16, 2012 at 11:52am

I'm not sure you should really be looking at it that way. I have two T1 kids and we have absolutely NO family history of T1 on either side. What are the chances of that? I was told when my daughter was diagnosed that my son's chances of getting it too was only about 5% greater than the "average" child. We happened to hit the lottery and have both of them dx'd. I think there are just in increase in diagnoses in general. Could it be environmental factors at play? If you genuinely want children, I'm not sure I would let your T1 stand in your way. Of course, that's a very personal decision. I've met lots of T1's who have perfectly healthy children and just as many perfectly healthy adults who have T1 children!

Comment by Mrs Stone on March 16, 2012 at 11:38am

Oh and I'm on the Ping (used the minimed for 5 yrs before) and now DexCom - both are great helps. Last A1C was 6.1!

Comment by Mrs Stone on March 16, 2012 at 11:26am

I'm having a hard time reading through these and not being scared of passing this on to my future children. My father had T1D but passed away at age 40, he has a brother with it and my mother also has a sister with T1d. I have 10 siblings, I was diagnosed 1st age 12 then my sister about 9 years later at age 11. My older brother was 33 and my other brother just diagnosed last year at 36. I have 24 nieces/nephews and thankfully none of them have been dx'd but they are all working on getting tested w/TrialNet.

Has knowing how this appears to be genetically linked made anyone decide against NOT having children? I don't want our children (which we very much want) to have to deal with T1D.

In looking at statistics and talking to my dr. - I was under the impression of about a 5-7% chance of kids getting T1d... it appears MUCH higher?!?

Comment by Jonna on January 11, 2012 at 4:50pm

Wow, John! That is, by far, the largest number of T1's in one family that I've heard of to date. Your family must have been through so much. Your adopted nephew is very lucky to be in such good hands. As a mom of two young T1's, I'm grateful for people like yourself who have participated in studies to advance diabetes care. My kids are both pumping and I'm looking forward to the day that we can incorporate CGM's to help advance their care. My 9 yr old daughter is opposed to them because she doesn't want another device connected to her. I'm hoping she changes her mind someday, especially after seeing your success!

Comment by John Thompson on January 11, 2012 at 2:48pm

Hello, I am one of 7 children and right now 6 out of the 7 have Type 1 diabetes. I developed it at the age 20, the ages my siblings developed it were 16, 21, 33, 35, and 49. My father was also one of seven and six out of the seven also had type 1 diabetes, he unfortunately lost his battle with diabetes at the age 59 many years ago. There is no history of Type 1 diabetes on my mom's side however. When I saw the battle my dad had with it along with the multiple complications my sister has from it, I was determined to get things in control - I joined the EDIC study which helped changed the way doctors treated diabetes back in the 90s and now I am on the extended study called DCCT. What was sort of a cruel joke, one brother and one sister decided to adopt children rather than pass along the disease and at age 8 my sister's son was diagnosed with Type1 - but we all look at it that he has a lot of help with it. I had some minor bumps with it but nothing I cannot handle. I help out my brothers and sisters and keep them up to date on the latest changes or devices. Four of us are on insulin pumps and three of us on CGMs. Sinced I moved to a CGM I have been amazed my A1Cs are in the 5.9 to 6.5 range consistently.

 

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