Wife of type 1 diabetic, worry about inheritance

Hi everyone,

I am new to this site. I am a wife to a wonderful husband who has type 1, diagnosed at age 8. We have been married 5 years, and have a daughter, age 3.5, and a newborn son, a week old. This is partly postpartum hormones, but I have a lot of worry on my mind right now over inheritance of type 1 from my husband. We have had our daughter tested with TrialNet for autoantibodies that may predispose her to type 1 since she was 1 year old, and plan to do the same with our son.

With research, it seems like each of my children has about a 12% chance of inheritance. I guess I'm just looking to connect with someone in a similar situation or with anyone who wants to share positive experiences.

Thanks!

Oh!  Of course you have worries!  This is weighing heavily on your mind for sure right now with that beautiful baby in your arms and heart.  My mantra is don't let tomorrow rob you of today.  If I were to worry about tomorrow I would be a loon!  The chances are always there for your children to develop Type 1 obviously.  When I got pregnant (I have T1) I was worried about this too.  I really do believe that we have no control over what is going to happen in our lives.  I do think that through meditation and positive thoughts and energy we can change our happiness about our situations.  I have an 11 year old who is healthy as can be.  I have a 9 year old diagnosed with T1 and Celiac disease at age 5.  I know many families that have children who never develop T1 or another autoimmune diseases.  Even if it does happen in your family you will be fine, we are making leaps and bounds in management and technology.  My daughter is amazing, beautiful, well adjusted, athletic and sweet- she also happens to have diabetes.  I know we don't want these things to happen but many other things could happen too that you could worry about.  Choose (if you can) to celebrate their great health andtheir remarkable accomplishments everyday and don't let tomorrow rob you of today! 

I have no relatives with T1 and there is no history at all. I have two sons in their 40s and two grandchildren, and none of them have diabetes. My diabetes was caused by my mumps and chickenpox when I was 5, in early 1945. That undoubtedly caused damage to my pancreas since my symptoms started while I was recovering from those diseases. I think that my getting T1 because of childhood  diseases made it very unlikely that my children would "inherit" T1. If your husband also had some disease that caused his T1, then I believe there is almost no chance they can inherit his T1. That assumes there are no other relatives with T1.

You need both genetics and an environmental impact to develop the disease.  you can walk around with the genetics your entire life but without the perfect storm it will not develop.  The environmental impact can be a virus, steroids, etc. Many families will have others who have thyroiditis, rheumatoid arthiritis, celiac disease, lupus- other autoimmune diseases.  Many think they are the only one with type 1 (like I was).  As an adult I am making connections to other autoimmune diseases within my family.  My disease just happens to be type 1.  I would recommend keeping your eye out for Celiac disease.  Has your husband been tested?  One in 10 with T1 have Celiac and often Celiac can preceed T1.  I know Emma had Celiac prior but was never picked up on. 

Wow, thank you all for such quick and kind responses! What a wonderful community I have found. Thank you Jewels for reminding me that faith and positivity are so important :) I will inquire about Celiac testing at the kids' pediatricians- my husband hasn't been tested that I know of- he may have been as a child, of course. As far as I know from my own research, there are no other autoimmune diseases (other than diabetes) on either side of the family. My husband's great-uncle had type 1, and my father-in-law has hypoglycemia, so I'm afraid we do have kind of a strong genetic component on his side. No one on my side has or had type 1 that I know of.

Richard, you are an inspiration to me that my husband can live a long and healthy life with his pump and a healthy lifestyle. He is 32 years old now. A1Cs are a little higher than we would like, but we are working on it. He's been on the pump for 4 years, with shots before that. He has done wonderfully with the pump.

So glad I found this forum!

[quote user="Richard Vaughn"]

I have no relatives with T1 and there is no history at all. I have two sons in their 40s and two grandchildren, and none of them have diabetes. My diabetes was caused by my mumps and chickenpox when I was 5, in early 1945. That undoubtedly caused damage to my pancreas since my symptoms started while I was recovering from those diseases. I think that my getting T1 because of childhood  diseases made it very unlikely that my children would "inherit" T1. If your husband also had some disease that caused his T1, then I believe there is almost no chance they can inherit his T1. That assumes there are no other relatives with T1.

[/quote]

 

Hi Richard,

   I've read where you talk about this before, and it confuses me.  It is my understanding that the "typical" way to get T1 diabetes is from autoimmune disease; meaning that you have another illnes, (such as chickenpox and mumps) and your due to the autoimmune diseaase, your body sees the beta cells in your pancreas as the same as the illness that it is fighting at that time, destroying them both.  Most people who suffer from chicken pox and mumps don't get diabetes.   Other clues that you have autoimmune disease would be the presence of the tell-tale antibodies, or the appearance of other autoimmune responses, such as thyroid disease, vitaligo, the list goes on-and-on, but includes frozen-shoulder, which I think you also said you have had?  So I'm not sure how the T1 response you have is any different than that of other people?  I'm just curious, because I only personally know of one person who didn't have T1 diabetes come on soon after an illness, (though some illnesses may be serious like yours was and also like mine was and others may be a series of colds or minor illness).  I had 105 fever for 9 days, and during my recovery from that I began to lose weight, get thirsty....  A 12% possibility of a father handing it down means it is 88% likely that your children wouldn't get it.    And even the general public, with no relatives at all with T1 or any other auto-immune disease has a 2% chance of getting it, which definitely isn't "no" chance.  I'm certainly glad your sons didn't get it, and hope my daugthers don't either! 

Cindy

Richard,

I found you response very interesting because my situation was very similar.  I had the mumps and measles in the spring of 1963 and was diagnosed with T1 in December that same year.  I was the first in my family to have T1 (a cousin was diagnosed several years later), but have many relatives with T2.  Thankfully, my mom recognized the symptoms early and took me to be tested.

Hi,

Im glad you considered trialnet and went through with it! I work as an Intern Pedatric Endocrinologist at Vanderbilt Childrens Hospital and we are HUGE advocates of Trialnet. It is a wonderful program. My sister has been tested and as of right now and her antibodies are low so her percentage of developing type 1 diabetes is very low. Its wonderful that you all helped a program that I will be able to eventually retain and possibly prevent full antibody attack of your endocrine glands.

Austin Bass

Link from ADA website re: chances of passing on D to your children--

http://www.diabetes.org/diabetes-basics/genetics-of-diabetes.html

[quote user="Anita Boland"]

Richard,

I found you response very interesting because my situation was very similar.  I had the mumps and measles in the spring of 1963 and was diagnosed with T1 in December that same year.  I was the first in my family to have T1 (a cousin was diagnosed several years later), but have many relatives with T2.  Thankfully, my mom recognized the symptoms early and took me to be tested.

[/quote]

It's very hard research-wise to determine that something is a causal factor and didn't just coincidentally happen around the same time. The newest research, coming from JDRF's research people, that I've heard is that they think a virus is NOT a cause. Also, with autoimmune diseases, they think many people have a genetic predisposition and something (not yet known what but tons of hypotheses...) sets it off. So, I wouldn't assume yours is related to the childhood illnesses.

I loved Dan Hurley's book Diabetes Rising for more info on causes. It was really informative.

http://www.amazon.com/Diabetes-Rising-Disease-Became-Pandemic/dp/1607144581/ref=sr_1_1?s=books&ie=UTF8&qid=1302193718&sr=1-1

Thanks, Austin!

I LOVE TrialNet! I came across it in a mom's magazine one day and I was thrilled!! Made me feel like I could be proactive, you know?! I have been SO happy with their representatives and everything about the program :)

[quote user="Sarah"]

Link from ADA website re: chances of passing on D to your children--

http://www.diabetes.org/diabetes-basics/genetics-of-diabetes.html

[/quote]

Thanks Sarah!  I'd been told that my son had a 2% chance of developing diabetes ( I was 32 when he was born and had been diabetic 28 years).  My statistic fits with the calculations on the link.  I also have no other family members with diabetes, but have many with other autoimmune diseases.

Sarah has found a link that is more informative than the ones I had seen, but I still think type 1 can result from childhood diseases. That doesn't mean that the diseases are the only factor leading to the pancreas no longer producing insulin. I had a very unhealthy childhood. I had measles as an infant. In my mother's diary she called it Infantile Measles. Later on I had two other kinds of measles. I had terrible tonsils and high fevers. The tonsils were removed when I was 3. There was also a hernia removed from my right side, before I had chicken pox and mumps. With all this poor health, I had very little resistance, and caught so many colds, flus, and eventually the chicken pox and mumps. After my diabetes was diagnosed and I was using insulin, my health improved very much, and I became healthy for the first time in a long time.

There was a very long discussion about the causes of type 1 on the tudiabetes.org site that started about two years ago. It went on for many pages. The great majority ot the replies cited diseases as the cause of their type 1. Most of them do not have relatives with type 1. While researching all this, I read that 70% of type 1 diabetics do not have any relatives with type 1. Type 2 is much more likely to have a genetic link, than type 1.

There is a chapter in my book that explores this topic.

It really is wonderful! I hopefully will be working with our trialnet at vanderbilt this summer! thanks again and best of luck!!!!!  :)

 

Austin Bass

Hi Cindy, I was diagnosed at 7, it was 1983.  No one in my family had it.  No one even had type 2.  AND I was not sick before I was diagnosed.  My immune system must have been fighting so hard I remained symptom free of whatever it was.  I have always thought it strange that no one ever looked into what "caused" my type 1.  But, I guess who really cares?  I would rather have the energy put into treating the present rather than the past.

Hi Cindy

This is from someone who was in your shoes at one point. I have a daughter who is now 22 and does not have Diabetes.  I had a son who got it when he was 5.

There's no way to know for sure if your child will or won't.  My hope is that you won't worry about it.  As my wife says about things, either it will happen or it won't.  You do know the symptoms, so just look out for them. If you notice your child losing weight and always being hungry and thirsty and making frequent bathroom runs, get out the old man's tester and test them.  If they're high take them in to the doc.  Even if they do get it it won't be ideal, but you'll be able to handle it.  And as many on here will attest, it is possible to live a long, healthy, happy life, in spite of Diabetes.

Deleted by me (:

The only compelling information I've seen about diabetes is statistical, that people in far northern countries like Norway, England, and Canada develop type 1 at a higher rate.  But it's difficult to know if there's a hereditary link or if it's from Vitamin D or something else related to the lack of daylight in those areas.

I think the vaccine link to type 1 is bogus.  If that were true there would have been a huge surge in type 1 in the last 50 years since vaccines have become routine, which hasn't happened.

I'm unsure about the childhood illness link.  It seems pretty anecdotal, since kids are often sick.  Of course it's possible that an illness triggers the pre-existing condition.  Good thing there are people smarter than me working to figure this stuff out.

[quote user="Sarah"] The newest research, coming from JDRF's research people, that I've heard is that they think a virus is NOT a cause. [/quote]

I don't think anyone believes viruses are a "cause", but according to the link you posted, it can be a trigger to the onset;

 "Another trigger might be viruses. Perhaps a virus that has only mild effects on most people triggers type 1 diabetes in others. .....In experiments that followed relatives of people with type 1 diabetes, researchers found that most of those who later got diabetes had certain autoantibodies in their blood for years before.  (Antibodies are proteins that destroy bacteria or viruses. Autoantibodies are antibodies 'gone bad,' which attack the body's own tissues.)"

This is pretty much the definition of auto-immune diseas.

to Richard's comment:

Richard Vaughn

I have no relatives with T1 and there is no history at all. I have two sons in their 40s and two grandchildren, and none of them have diabetes. My diabetes was caused by my mumps and chickenpox when I was 5, in early 1945. That undoubtedly caused damage to my pancreas since my symptoms started while I was recovering from those diseases. I think that my getting T1 because of childhood  diseases made it very unlikely that my children would "inherit" T1. If your husband also had some disease that caused his T1, then I believe there is almost no chance they can inherit his T1. That assumes there are no other relatives with T1.

When I was about 4 I had VERY bad asthma -- I was given plenty of Prednisone, Adrenaline, and other stuff to help stop the wheezing ... 6 years later T1 ... REALLY??  While my hypothesis is often brushed aside by my endos', I really believe there is SOME correlation ...

My three sons do not have T1 -

No one in my family before me had T1 -

But ok -- I do and I [try] make sure I do the best I can everyday!

Scott