Hello! My name is Vicky and I have been a T1 for almost 23 years. I am 17 weeks pregnant with our 3rd little miracle, due in Sept. We have a 5 year old boy and a 17 month old boy, both VERY HEALTHY and beautiful little angels!
I am on the Minimed REVEL insuling pump with Humalog (humilin). I have used Minimed about 10 years now. I used syringes in the beginning then pens and eventually the pump. I have and have used the CGM by minimed. Find it useful when it calibrates well. I recently tried the DEXCOM through my Endo for a week. Loved that system, but it was a sperate unit to carry so I won't buy that one for myself.
I have been the only diabetic in my family for 23 years. I have 5 brothers, numerous cousins, aunts, uncles, etc... Even my grandmothers were both in the 90's when they passed and they nor my grandfathers had even type 2.....strange enough, I got diabetes at age 11 and my baby brother was just diagnosed 3 DAYS AGO! He is 27! He was released from the hospital today. I wish I could be there to help him adjust but he lived over 2100 miles away in Seattle and I in Chicago. Nonetheless, I am shocked he has it now. I am MAD at this disease becuase I thought it was just a fluke that I got it, now I worry it's in fact hereditary and now my kids are at risk.
I am curious to hear the stories of others whom have this disease and if it runs in your families or not. I know Typoe 2 is very common due to obesity, but Tyoe 1 seems so random to me.
I have been T1 for 22 years now. No one in my family has it, besides me, as far as I know there is no family history. (My aunt had gestational diabetes, but that is obviously not hereditary). It is supposedly genetic, but something like 80% of people who have it don't have any family history. Truth is they don't know exactly how/why it shows up. There is probably some genetic component to it, but as with other things, there have to be other factors that make the 'perfect storm' for someone to have it. And remember, your baby has 1/2 your genes and 1/2 from the dad, so there is a good chance that you won't pass on a bum gene (if there is one).
So no one knows exactly how it happens. And from what it looks like, your kids shouldn't have much more risk of getting it than other non T1s, so I would try not to worry about it. I have thought a lot about this over the years, worrying about passing it on too, but the more research I do, and people I talk to, it seems like that worry shouldn't be any stronger than worry's of other things.
My husband and I started trying in January, my body seems to be getting used to being off birth control (though my blood sugars were fun to deal with for about 2 months), so we hope to conceive soon!
I think Cindy makes a good point - since they have not figured out a definitive cause for T1, there may be a genetic component. But since your baby has 1/2 your genes and 1/2 from your hubby, it isn't certain that you're going to pass the "bum" gene on. Plus, it might not be a gene, it might have been something both you and your brother were exposed to when younger that resurfaced some time later.
I too had no family history of type 1, except me. I was 11 years old and had strepe throat that made me really sick. after a couple weeks, I kept getting more and more ill. after 6 weeks of doctor visits and them telling me I had the stomach flu, my parents finally took me to the hospital where my blood glucose registered at exactlly 1000, the highest any of the hospital reps (nurses, endo) had ever seen. That's when I was diagnosed. I was told it was due to my comprimised immune system from the strep throat or other flu like virus. No one else in my family, as far up as granparents and great aunts, uncles, cousins, etc... even had tyoe 2. to this day, except my lil brother was diagnosed now with type 1 last wednesday, a week ago! He is 27 now and taking insulin. He thinks he can reverse it by juicing and eating well. I tell him to text me all his glucose numbers along w/insuling units and times so I can ensure he is eating and taking insulin. He is still in denial I believe.
I am taking my kids next week to have their blood drawn to determined if they are suseptable to Diabetes. To ensure that I can do everything in my power to avoid the onset if there is a risk. I didn't have major anxiety over my kids getting diabetes until my little brother was recently diagnosed. I just want to make certain I do everything in my power to avoid my kids ever having to deal with diabetes. I know I cannot manage fate, but I can certainly be prepared if the chance is there.
Good luck to you and in your path to motherhood! Wishing you much happiness and success!
Hi Anm, True. It is such a perplexing disease to me. I accepted my fate and have been very heathly. I just recently became worried for my kids when my brother was diagnosed. I just always imagined my diagnoses was a fluke, bad luck, etc...now I am concerened it may be passed on. Regardless, we have to live for today and enjoy our health.
Regardless, I will get a definate answer as to whether or not my kids have the 'gene' (not sure the correct terminology) for diabetes in the next few weeks, per a research study for the potential heredity of T1 diabetes.
I was diagnosed at age 26. Nobody knew what was wrong, I weighed like 118 lbs, standing 5'9", and I was gross. Local doctors misdiagnosed me as a type 2 because of my age, and conflicting blood tests. I have one paternal uncle who is also a type 1 diabetic, also diagnosed later in life.
Type 1 is really random, there are heredity factors, but environmental factors also, so some people whao are genetically predisposed don't get it. It is kind of the luck (or unluck, I guess in this case) of the draw.
This is what I thought was strange, it came from the ADA website, I found it before we got pregnant:
"In general, if you are a man with type 1 diabetes, the odds of your child getting diabetes are 1 in 17. If you are a woman with type 1 diabetes and your child was born before you were 25, your child's risk is 1 in 25; if your child was born after you turned 25, your child's risk is 1 in 100.
Your child's risk is doubled if you developed diabetes before age 11. If both you and your partner have type 1 diabetes, the risk is between 1 in 10 and 1 in 4."
I also was diagnosed at 11. I was very lucky because my mom is a nurse. She recognized the signs right off - particularly after going to a small town to shop, where there were very few bathrooms, and I had to go all the time. So I never got sick, and my blood sugar was only in the 200s when diagnosed. I have never heard of anyone in three digits!
I hope that your brother comes to terms soon - you can't reverse it, and the quicker you accept things the better off you will be. Good luck in helping him through this hard time, I hope he listens to you!
I hope that you post information you get from the doctors about that blood test and what it tells you - I hadn't heard of anything that told you definitively if you have the gene or not, or anything along those lines. I am always interested in learning anything new, especially as I get ready for the next stage in my life. I definitely would like to do whatever I can do to prevent it from being passed on.
Thanks for the well wishes, I will post as things develop!
I agree about the random - I don't think that it is as much of a genetic factor as they thought it was in the beginning. There is too much in our environment and our bodies are so complicated that it is very hard to pinpoint why/how things happen sometimes.
Thanks for the stats, that is very interesting - funny that the odds go down as you get older, would have thought the opposite.
As with any percentages and odds you have to take them with a grain of salt sometimes, especially as they still don't really know the cause. But definitely food for thought, and interesting for sure. Thanks for sharing!
I too thought this was interesting. You are very welcome, and of course I take all of this information with a grain of salt, because when you read and do some research it doesn't take long to realize that the "experts" are not really, because so little is known!
Yes, thank you for the stats. Interesting to see first hand.
The testing I am doing with my kids next week is a trail hosted by the Kidney Association to test a drug that is thought or known or shoudl I say, they hope will kick start beta cells to work in newly diagnosed T1 patients. They monitor what they consider genetically predisposed cases (i.e. kids of T1's, siblings of T1's then they also select an an addition tier nieces/nephews of T1's, grandkids of T1's, etc... whatever it is they find in the blood to conclude if a child is suseptible is unknown to me, however I go next Friday and I imagine I will gather much more input from there. If my children, God forbid, are suspectible, then they follow the child to predetermine Type 1 diagnoses and upon diagnoses they provide this new 'study drug" to kickstart or rehabiliate the production or progress of beta cells, as they are also doing with newly diagnosed diabetes, those diagnosed within 90 days. I am mainly interested in finding out my kids chances. I cannot imagine life if they had to suffer the same fate. I honestly would have debated conceiving had I thought they were at a great risk. I prolly would have adopted a needy child. Granted, you don't know their genetic predisposition! Regardless, i guess this is a good example of being grateful for what you have and appreciating every second of it!
That is really interesting! What part of the country are you from? That sounds like a relatively new test, it is just nice to hear doctors making advances like this.
I live outside of Chicago. The test is to determine the creditbility of a new drug that potentially can assit the beta cells or revivie. something of the sort. the benefit as in my case, is to test my off-spring and if any of my siblings are interested, they too are candidates since my younger bro was just diagnosed as well. I will update once i get more inout after this next week.
I'm a type 1 and have been for 23 years (I'm 28). I'm 13 weeks pregnant with my first. Type 1 is definitely hereditary. My dad's twin brother and my mom's sister are both type 1. My uncle got it at 12 and my aunt at 8. My uncle died from multiple complications at 50. My aunt is still living. My mom's parents both have type 2 and were never obese.
My parents were told the chances of their children getting type 1 was 25%. I've been told that the chances my child will have type 1 at sometime early in life range from 10-50% (different doctors have different ideas). The endocrinologist I think knows the most says the chance is 30% because of my family history and the fact that I got diabetes before the age of 11.
Hi Michelle! Wow, diabetes is prominent in your family. Congrats on the pregnancy! That is great news! I was diagnosed at 12 years old and I am now 32. I am pregnant with my 3rd child (it's a girl!!!). I have 2 extremely healthy boys, almost 6 yrs old and 17 months.
My little brother is 27 and diagnosed 2 weeks ago. No one in our family history even has type 2 diabetes, nor tyoe 1 except my lil bro and I. I took my two kids to a trial yesterday to determine if they carry any of the specific antibodies that have been found to be carried by all T1 diabetes. This study is sponsered through the JDRF and Kidney Foundation. I am in Chicago and when to a local medical office to meet with one of the Trial Study Doctors. They just took two vials of blood from each kid. My baby was great about it and the 5 yr old had a major panic attack when he realized a needle was involved so they only got about a quarter of one vial. We are hoping it was enough to test.
I will find out in 30 days if they carry the antibody or multiple antibodies. Itf they do, then they will qualify for a glucose test. If they should fail the glucose test, they will be considered 'pre-diabetic" and continue to the 3rd portion of the trial which includes a drug they are testing to increase the response of beta cells to ultimately lessen the chances of their bodies developing full on diabetes (T1).
I am hoping and praying they DO NOT carry the anitibody. I give so much credit to the parents of diabetic kids. It is so hard to deal with I imagine and being diabetes for most of my life I do not wish this disease upon anyone, let alone children. I know I can deal with it in my own body, but it breaks my heart to think about others suffering.
We have to be grateful for our strengths and abilities. I am very healthy, have ZERO signs of complications after 23 years and I am very thankful for this. I am even more so thankful for my ability to have beautifully healthy babies! Although we are stopping after number 3! 3 is certainly enough for me!!
Bless you and your baby! I wish you all the best and thanks for your post!
I live in a northern suburb of Chicago and work in Skokie. What hospital is this through? I'd love to learn more about it. What are the names of the antibodies all type 1s have?
I am who I am because of everything I've experienced, including the diabetes. I never though of it was something horrible or regretful or that I suffer because of it. Of course I'd also hope my own child will never get diabetes, but you have to put a positive spin on things ;) (I'm an incredible realist bordering on pessimist about everything else, but never felt that way about diabetes, it's just reality, existence for me.) I don't have any complications either. If my child gets diabetes, I know life will be more difficult for them and me, but I also know I'll be the perfect parent for dealing with all the issues.
I saw your post and was actually interested in it for a different reason. First, I’m 37, have had T1 since I was 6 and I have two great, healthy boys (ages 5.5 and 2.5). I use the Minimed pump and CGM and am in very good health. Like many of you, no one in my family has or had T1 diabetes or T2 so who knows? Anyway, my husband and I are on the fence about having a 3rd baby. On the one hand, we’d love to have a 3rd and feel that now is the time if we’re going to do it. On the other hand, I wonder if I’m pushing my diabetes luck. Both of mine were born 3 weeks early with C-sections. I just don’t want to have a disastrous 3rd pregnancy or even add way too much stress to our lives with 3 kids. Any advice? Thanks in advance Vicky and anyone else who has thoughts on this issue!