Comment

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.

Comment by Jodil on November 5, 2011 at 7:17am

Wow, everyone's story reads like my own. I was diagnosed with Type 1 after developing gestational diabetes at 16 weeks into my pregnancy. My father and brother are Type 1 so the doctors kept an eye and me and after I delivered my son I became a Type 1. Last year at the age of 8, my son was diagnosed with Type 1 diabetes as well. Clearly there is a genetic compenent and I was the oldest at age 31 (my dad was 1, my brother was 12 and my son was 8). Good luck to everyone...my heart goes out to all of you and keep well :-)

Comment by momwith3 on November 5, 2011 at 6:28am

HI I have two t1 children and my husband is ti also. I can't believe how many people are being diagnosed as t1 in their twenties and over. I have another son and was hoping he was ok and past the main time to get it. I have heard of a few people diagnosed later in life, but I didn't realize how many are. I have not had my other son checked and he is 16. It is nice to have a forum to hear about how others with multiples in the house are fairing. For us it has its ups and downs. I have had to learn to handle stress better. I had to take time off work and deal with this problem for me, but with conselling I am better able to handle the daily stresses of the disease. I don't have it and I feel guilty I am the one who could not handle the stress of it and a full time job. I will be returning to work soon, but only half time to see how it goes.

Comment by Colleen on July 12, 2011 at 9:02pm

At 37 I developed gestational diabetes with my fourth child. After the birth my numbers were fine but I failed the six week fasting glucose test. They diagnosed me with Type 2 based on my age but eventually figured out I was Type 1 (I and all four of my siblings had Hashimoto's autoimmune thyroid disease). I had all of my children and some relatives tested through TrialNet. My daughter and sister came back as high risk. They enrolled in the program and were tested every six months. Four years after my dx I randomly tested my eleven months older brother at a family wedding and his level was almost 500. I told him to see his physician and tell him his sister had Type 1. Sadly, his doctor didn't listen to him and treated him for Type 2. He lost 60 lbs, was hospitalized for a week with DKA and didn't get treated properly until I brought him to Boston the day he left the ICU. He was put on insulin immediately. My daughter was dx four years after him at the age of 13. My brother died three months later of DKA after using cocaine. My sister is still at high risk and is being followed by doctors but hasn't developed it yet. They even repeated the tests to make sure. There is no family history (my mother traveled to Ireland to see if there were cases we didn't know about in her large family). Unfortunately, all the autoimmune diseases started with my generation. I have not had my other children retested because they were
categorized as low risk, i.e., same risk as the general population and, despite all
that has happened, I am still an optimist who relies on numbers. If there was any doubt, however, I would test them. I am still in shock at how this disease invaded our family in such a short time and already took its toll.

Comment by Dani on July 11, 2011 at 11:27am

Hi, my name is Dani from Houston, TX. My daughter was dx'd with T1 at the age of 9 months (she is 20 now) and I was recently with T1 this year. I just received my TrialNet information so my 9 year old can be tested. I don't know anyone with T1 besides the two of us, so I am so glad to have found this group!

Comment by shirleyanne on June 23, 2011 at 9:27am

I posted earlier that we were waiting for my son Max's TrialNet results .... thankfully he tested negative again (4th test, had his 1st at 12 months). His brother Nicholas was dX in 2006 and I was dX in 1986. The incidences of multiple family members developing T1 is really shocking .... I believe it should be researched more thoroughly (which TrialNet is attempting to do) ... I have 2 sisters and 6 nieces and nephews and none of them are T1. Really hoping the link ends in our family and my youngest son Max escapes this lifelong burden.

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