Being responsible about diabetic genes

Type 1 and LADA
1

It is a proven fact that diabetes is a genetic thing. When I was a young man of 17 years old I tried to get a vasectomy. The doctor told me to get lost until I had sired 2 kids. I kept going back to different doctors over 2 decades until I finally got one when I was nearly 40.

Being a type 1 from the time I was 4 years old I thought the medical community would consider my request with more respect than I ever got. My sister, who never had diabetes, had a boy child who was type one when he was 2 years old. That fact nearly destroyed me because I know she knew the risk, and made me glad I had been sniped. I worry about him daily.

Has any diabetic taken the responsible action to ensure they could never sire a diabetic kid, to spread the pain in the name of vanity?

We all know what misery it brings, how much harder life can be, and all the psychological damage us people have to live with.

Don

2

I think that… we can’t predict what we’re going to get, and what our kids are going to get… The chances are supposed to be about 3-7% depending on the gender of the parent with Type 1, and it only increases to 50% if both parents are Type 1… in many ways, that 3-7% could be the same for people who carry cancer in their families… Should people who carry cancer in their families not have kids, either? Should they plan on not doing much with their lives because they might get cancer one day? In many families, disease may even skip many generations… or maybe just ONE sibling out of many may get it. While I respect other’s decisions to not have children… I wouldn’t go as far to say as it is a “genetic responsibility.” That would imply the rest of us are irresponsible, and we really are not. You could get any number of diseases you didn’t plan for, even if it wasn’t Diabetes… I’m not going to blame grampa Joe on any of them. Life just happens, sometimes.

3

Meh, I don't want to have kids. Nothing to do with diabetes, I just hate kids. Despise them. But your theory that a genetic predisposition to a disease (and diabetes is far from being a strictly genetic disorder) would apply to every disease with a genetic predisposition. Cancer, heart problems, autism/mentally disabled etc. I don't think I've ever met someone who didn't have at least one of those in their blood related family. Given they had a risk of carrying the disease/condition then, even if they weren't symptomatic, no one should have children. And given that diabetes is a lot better than some conditions people knowingly pass or take a risk passing on to their children (HIV/AIDS, Autism/mental disability, etc) it's one of the lesser ones to worry about. Diabetes is treatable. Many other things are not. If people quit having children for fear of them being freaks then the human race has about a century before it's extinct because everyone would quit having children.

BTW, I'm a black sheep Dx as an adult. Unlike you who has had this virtually all your life I led a normal life without needles, drugs, meters etc. and did/ate whatever I wanted. I still do whatever I want (not the eating part though). Now I just do it with my awesome man-purse and make all the old ladies at golden corral think I'm a heroin addict.

4

My cousin was a Type 1 just like me. She had her tubes tied right before she got married so she wouldn't have kids. I'm a Type 1 myself, took it back in 73, I have 2 daughters (I thought long and hard about it b/f I had either I came to the conclusion that things were waaaay better now than then when I was told I would NEVER live to see 30 and I would hasve major complacations from it as long as I lived in my 20's) My oldest was born missing her left hand. Blamed that on diabetes til the Dr told both of us it was caused by a bloodclot invetro) I get through 10 and think I now only have a child with one problem. At 11 she takes diabetes. Type 1 like her mom. My other daughter has never had that problem (knock on wood) I blamed myself for her taking it for a VERY long time. She looked at me one day not too long ago and told me "Its not your fault I took diabetes mom. It was just God's choice for me". Now that made me feel worlds better. Tell your nephew it was to quote a phrase "God's choice for him"

To answer your question I NEVER thought about not having kids. I wanted them. They say all mom went through and so my daughter knew how to care for herself when the time came.

5

I have not, but strongly considered it. So to be clear, I have two sons whom i love dearly, but like yourself, when I got the disease I felt that chapter of my life had closed.

When i was considering getting married, I told the wife, I would never sire a child. She did not understand and over time she talked me into it. Both of my sons so not have diabetes, but just the same i was constantly on guard,and today even though they are 28 and 31, i still insist on checking their blood sugar. SO then comes the question am I glad I had these wonderful sons. or should i have followed my original plan? Especially now that I have two beautiful grandchildren and another on the way.

I still don't know, a ;lady i know who has type 1 decided she would have children and so did i. We compared our life choices and each said our life would have been much worse without children. Now I may change my mind, if one of the grandchildren are diagnosed. But for now, I am glad I had the sons.

So why would I say that, given all the worry I put into this? Well the simple fact are the tech advances. My aunt got the disease when she was 10, she lived until 13. My mom was diagnosed at 26 and she lived until 46. I was diagnosed at 17 and I am 53 now. In Aunt Patty's day my moms life would have been fantastic. In my moms life, my life would have been fantastic, and in my life, the vaccine that prevents the disease will be fantastic.

We strive as a community and a people not because we have it easy. We strive and live, because we have hope. my hope is that all diabetics will know the hope I have seen in my life.

rick phillips

6

The chances of me passing it on, according to research I’ve seen, is about 2%. I’m willing to take that chance. I feel very strongly that I want children in my future. Now, if that for some reason should prove impossible (and I don’t know why it would), I’m open to the idea of adoption as a second choice. I just know that I want to be a mother.

7

My dad has MS, and 3 sons. Two of us have T1 diabetes, one has Crohn’s - all 4 of us have autoimmune diseases. I know I speak for myself, and I’m pretty positive that I speak for my brothers as well, when I say that we’re all happy we were born. My father knew he had MS before he had me or my little brother. If he had decided then not to have kids due to genetic risk, I wouldn’t be around, and I’m glad I’m here, diabetes or not :). I’ve considered the same thing when I think about having children with my wife of two years. I think that my kid will be happy to be around too, even if he has an autoimmune disease. I’m also optimistic about the medical technology my child will see, so that even if my child has MS, which has been devastating for my father, I think my child will still have a high quality of life.

8

I find it shocking that doctors denied your request for a vasectomy. People don't have to give any reason for wanting one.

I have two nephews with cystic fibrosis. No one on either side of the parents' families have CF, but clearly both parents are carriers. We never know what's in our gene pool. I'm the only T1 in my family.

9

Kari:

One of the geneticist i consulted, said my chance of passing it along was about 50 / 50. When i spoke with my friend who had children later, she was told she had about 10% chance. What we don't understand is that the study of the disease improved about that much. I consulted the professional in 1976, my friend in 1984, and my oldest son in 2002. His risk of passing it on was thought to be about 2%..

What we are seeing in a sense, is how genetics has improved and how much our understanding has improved. Technology has helped and i am glad, the results give us more assurance, that having children is not a closed option. Now what is a little strange is against those small odds, how did we draw the lucky straw? I will gladly give mine back. LOl

rick phillips

10

There is no history is type 1 diabetes in my family and I have it anyway. My life might not be what I wanted it to be because of this disease, but it’s sure better than the alternative. That said, I don’t plan on having children. I didn’t want children before I was diagnosed and knowing the risks to my own health carrying a baby to term has solidified my decision. The risks of passing this disease on barely comes into it since that risk is so low.

11

I chose to Not have children either.. My Mother, then 2 yr older Sister , then Me and then my younger brother all got T1 as adult Onset.. in our 40's.. So I decided to just Find and Marry a woman who already had kids and it worked out just great..

The Medical Profession plays down this issue of passing it onway too little and they have someTest to test for the Genes now to help in this serious decision..

I decided Not to have to deal with the fact of having T1 kids and causing all the Pain and suffering it has caused my family

I've met other t1 parents w/t1 kids and they privately feelthe added burden and guilt, but their kids are doing OK , but if and when they start having serious problems, is when it takes it's toll... and I have sympathy for them.

This Issue can be history when we get "some kind of Temporary And then a Permemnt cure..

Temporary isLike Injecting Iselt Cells every 6 mos and gives both Normal BG's and Elimiantes the Complications

A Permement Cure is of course, Destroying the Genesthat cause it and they are working on it, thru the Genoome Project..

Saw a story about it a few yrs ago...

and remember.. they didn't know even 10% of what we know now about T1 even 10-15 yrs ago..I don't blame my mother, nor anyone else born with it before say in the past 5 yrs or so.

Going forward? I surely would not want to take the risk if the Gene tests proved I would have a Big Increase of having Kids that would get T1.

Imagine having ALS and Having All your children get it as well?

I've seen my mother die of it a miserable Last coupleof yrs..Being Totally Blind, In a Wheelchair and on Kidney Dialysis and saw many others in the D Ward as well..

Butt? They go there T1 when it was in the Dark Ages! No test meters, Lousy insulins, 175 was about the best you could get, and host of other arcaic things went on.. They lived an ave of another 30 yrs Like that( she died at age 72)

and as they say now,there are different types of T1.. some are more aggressive with their Complications than others..

But,I have to tell you? I wouldn't gomarrying a person with it and expect tohave kids with them.. You can thank (or Curse) the PC and the Internet of making our Disease Information alot more available to the General Public.. Just like would you marry someone with ALS or one of the other Very serious Diseases and want to have kids with them if you have a Choice?

Of course you wouldn't..

12

My mother, who never drank a drop of alcohol in her life (alcoholic father) died from complications related to cirrhosis of the liver, while on the liver transplant list. It was caused by an autoimmune disease called PBC (primary biliary cirrhosis). Her mother and aunts had rheumatoid arthritis, another autoimmune disease. Those were more horrible autoimmune diseases than diabetes has been.

I wouldn't say my choice is based on diabetes alone, though. I have too much other stuff that is worse than diabetes. Who knows what horrible autoimmune disease(s) my children would inherit? It isn't just that you might pass along diabetes, but it is rational to consider that there is a huge list of unknown autoimmune diseases to which you could be exposing your potential children.

I don't question those who would choose to have children who have higher potential to be diabetic, but it takes a special person to add that to their list of worries. Maybe I am a chicken. Who knows?

13

There's a VERY good reason for doctors to deny a vasectomy. Should later in life he decides he wants children and the vasectomy be irreversible he can sue the doctor. But he wanted the vasectomy you say? Vasectomies are, in almost all cases, an elective surgery. Like other elective surgeries for the person to elect to have them they must be in their right (stable, sane) mind. Later in life his lawsuit claims he didn't realize he might want children later and unfortunately in our lawsuit society he would win.

Generally doctors want a person to be about forty with two children minimum so they can avoid this from happening. I know a person I was stationed with that had one done at 24, single with no children. He had to go once a week to a psychiatrist for six months to determine he was sane and truly didn't want children. It's sad that a person has to suffer through that in order to have something they want, but unfortunately some selfish people who want to blame all their problems on others ruin everyone elses care.

14

I can understand being denied at 17 years old.

About 500,000 vascetomies are done evey year in the US. Half a million procedures annually is quite a lot for doctors to be wary of future lawsuits, so perhaps winning a lawsuit isn't common. Maybe the half million are men 40 & over. I haven't been able to find stats for CA where Don lives. Not always successful, but a vascetomy can be reversed. Storing sperm is another option. The figures given for female tubal ligation 2.5 million annually, five times as many, which is rarely reversible. Would be interesting to find out if more men are denied sterilization than women with & without children.

Is sad that someone had to undergo six months of counseling to assert his reproductive rights. Women are still fighting this battle on another front.

15

Good thing you out ran them. I've heard vascetomy by scissors to be most unpleasant.

Yea, my mother said I had to be different, but this wasn't how I planned on distinguishing myself. Should have made my wish to be unique more specific.

Hi & tummy rubs to Leo!

16

I think my son is angry with me for passing on depression, which runs in our family. But I wanted a child (actually wanted more, but it wasn't possible). And there was no way to tell the risk. He also runs a risk of diabetes, which I DO worry about, but I can't do anything about it.

Having children is a very individual decision, and no one should argue with you about it. Don't marry a person who doesn't agree with you!

If I had it to do over again, I still would have had him. Depression has been much more disabling than diabetes for me, but I don't regret having a life, and I hope my son eventually comes around to realizing that life is worth enjoying too. And that his mother didn't mean it.

17

Here’s the thing… There are many people in the general population who probably carry the genes that cause Type 1, yet they do not know it and may never develop Type 1, nor have children who develop it. Type 1 has a genetic component but needs an environmental trigger. Only 50 percent of identical twins will develop Type 1 so having a genetic risk is not as compelling as for other conditions. Type 2 has a stronger genetic component than Type 1 and, supposedly, one in three will develop Type 2. We thought we had no family history of Type 1 but as it turned out my mother’s first cousin developed Type 1 at 17. She was obese so we always assumed she had Type 2. Which turned out not to be the case. If there is a strong family history then it would be up to each to make his or her own decision. If you, as a Type 1, did not reproduce, your brothers and sisters would also have to do the same to eliminate genetic risk. As well as, in our case, all the first cousins. Maybe they will be able to genetically screen before a child is born, in the early stages of pregnancy some day. I would not knowingly pass Type 1 on; no one would.

18

MissKitka, your post really struck a chord with me. I've been trying to conceive for the past three years with no success. Having been diagnosed in June 2010, it was suggested to me that my uncontrolled sugars (20+ A1C at dx) could have been one reason for the lack of success. My last 2 A1Cs have been OK but there's still nothing on the conception front. I'm trying to be philosophical about it and trying to count my numerous blessings without the added blessing of children (or just the one!). Also too the thought strikes me that I really shouldn't be passing on my D-genes (non-autoimmune but vicious and vindictive in their own way) to blight another generation.

At my latest endo appointment, I was told that the genetic dice were so heavily loaded that there was no way I could have avoided D, and that I had received 'hits' from both sides of the family. It made me wonder how, if my parents could have known this, if they might have made different decisions. It also now makes me think that infertility (just one of several unexplained, chronic medical problems that I have!!) might be a blessing in disguise as I get to draw a line in the sand so to speak, and let the buck stop here.

19

We may want to make a choice about not having kids because we don't want them to have diabetes. But by choosing to not have kids, you are also denying all the good that can come from kids. For many, having children is one of the biggest joys in life. And you would have to be pretty depressed to suggest that you would just rather not been born than have diabetes. I choose life "despite" my diabetes.

And today, diabetes certainly sucks, but it is "manageable." Who are we to suggest the our future diabetic child won't be a Nicole Johson, Bobby Clarke, Vic Garber or someone like Stephen Hawking. These people achieved stuff, been happy and have had good, productive lives by any measure. We can't predict who our children could become, both the good and the bad. And in the end as parents, our job is just to give them the best opportunity.

Just some alternate thoughts.

1 Like
20

With my luck, I'd get a vasectomy, and they'd announce a cure (or vaccine) for diabetes the next day.