Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Passing on AS to children

My mother and I were recently talking about if having children would be genetically responsible. I unfortunately have bad genes on both sides of the family when it comes to disease in this family. (The family medical history is so bad that when my parents took me to my first doctor and they gave the history he asked why they even had children!)

My question is what are the risks of passing on AS and has anyone had consulted with a genetic counselor and what they may have said. Is it harder to get pregnant and carry a child to term with AS?

Thanks,
Cubsgirlfan

I don't know. I never had children and it's one of the great regrets of my life. Are you HLA-B27+? I can't remember right now is all. Still, even if you are B27+, there's a chance that a child of yours might not develop AS. You kind of have to take that as it comes.

And it would also depend on what other diseases are involved. Frankly, the doctor who said that to your parents should be shot. It was unfeeling and callous. Children are a blessing and if your child were to develop some disease through your family's genetics, who better to teach him or her how to live well and persevere than you who lives with AS?

I'm really touchy on the whole genetic testing thing. My stepson and his girlfriend are having a baby next winter and they're doing the genetic testing and have been discussing whether or not they would abort if the genetics came up badly enough. Gave me the heeby jeebies.

Ultimately, CGF (your username initials), it's your decision and up to you and your partner. You are the only people qualified to make this decision and your family and doctors should support you, no matter what you decide.

From what I hear around here, by the way, it is not generally more difficult to get pregnant or carry a child to term. Some very lucky women actually have something of a remission while pregnant. They are, it would appear, in the minority, but every woman here who's had a child will more than likely tell you that it doesn't matter. Their baby has blessed their lives.

I don't know if any of that helps.

Hugs,

If you are HLA-b27+ and do indeed have AS, your child would have a 50% chance of also being HLA-b27+. If the child is positive, they would have a 20% chance of developing a spondyloarthropathy sometime in their lifetime. So the risk of having a child with spondy (about 10%) is much less then the probability of having a child who does not develop the problem (about 90%).

Although I did not have genetic counseling, I do have AS and 2 of my 3 children have Juvenile Spondyloarthropathy. I have been told that having 2 kids with this issue diagnosed in childhood (both teenagers) is extremely rare. (In the US, there are approximately 350 sibling pairs of children with all forms of Juvenile Arthritis. That is out of approximately 300,000 kids with arthritis and 75,000,000 children overall.) Our experience is far from typical. That said, both kids are doing extremely well on anti-TNF medications. Both are considered in clinical remission and you would have difficulty differentiating them from their friends or non-affected brother.

I had no difficulty getting pregnant or carrying my children to term. At that point in my life, my AS symptoms would come and go - seemingly at random. It would be difficult to say if my symptoms were better during pregnancy, but I do recall flaring after each delivery.

i too never had children, just got too busy, and before i knew it, it was no longer biologically possible, went through perimenopause relatively early, guess i wasn't planning on that. but at this point in my life, no regrets, though i love kids, and could imagine that life too, i also like the life that i have.

but my family has all kinds of "genetic" diseases. most of my relatives have not made it past their 50s or 60s, mostly due to diabetes / heart issues, though now with better knowledge, my mom is turning 70, and doing well physically, yay!

and then there's also the arthritis issues that we all seem to get in our 30s or so. and other things as well, but they are the big ones.

but not once has anyone, brother, sister, etc ever considered not having children due to bad genetics.

children are always a blessing. life is unpredictable.

if everyone that had health issues / genetic issues in their family didn't have children, i think the human race would cease to exist.

i think you should do what you and your husband want to do, what is in your heart, and try not to listen to anyone else on this.

and like kat, can't believe a doctor would say that to a patient!

Of four children in my family, only I have AS. I have three children, and none of them have AS (they are in their 20s). Of my 10 nieces and nephews, only one has AS. The odds of getting AS are low, even with being HLA-B27+.

And, even with having AS, I am leading a productive and fulfilling life. I prefer to have been born and getting AS than to never having been born at all! And with NSD, my AS pain has diminished greatly, so I am having an enjoyable life again.

So, don't let the thought of passing along AS stop you from having children.

Hi Cubsgirlfan
Before i was pregnant with my son i didnt know that i had AS it wasn't diagnosed until feb 2011 when my son was nearly four.
It took me 3 months to concieve the first time (which I've heard is pretty good) but unfortunately it resulted in a miscarriage at 9 weeks. After 3 months of sadness and wondering what i had done wrong we decided to try again and concieved again within 3 months this time the pregnancy was great and looking back i did notice that my aches and pains did actually go away. I carried till full term infact he was 2 weeks late.
I had a really bad birth and my back hurt more than the stomach contractions (which i am now presuming was the AS) but he is soooooooo worth it he is gorgeous, happy, content(I could go on) helpful and he understands that mummy cant play as much some days but hes ok with that we read, paint, colour instead of doing active things.
I do worry about passing As on to him but its a question i havent asked yet, so although i don't know about the genetic side i do know that i conceived in a short time and carried to full term and gave birth to a healthy baby boy of 9lb 8oz.
So if you know whats in your heart and you want it bad enough go for it.
Sorry its such a long post i got carried away with baby talk lol i'm actually thinking of going through it all again.
Good luck
Cheryl

I think you can research pasts posts from this as it has come up several times...first I would have slapped that Dr. I realize alo of families have alot of baggage nd I understand what he meant but I say go for it!

I have 3 biological children 1 pre-AS 2 after..all 3 exhibit signs and have had issues over the years. Pregnancy for me was wonderful each time I LOVED being pregnant, labor was short 3 hours with the first, 2 with the 2nd and 1 and 1/2 with number 3. I was worried about trying to have them with all the joint and SI issues but I did fine. After I had them I nursed them and did wonderfully for like a year to 18 months then it came back. For me being pregnant seemed to put my AS in remission thank goodness.

You cant life your life with what ifs a ton of things can happen to a child but most likely wont enjoy yourself have your kids, cherish the days and take one day at a time I wouldnt trade my kids for anything or their health problems I am a better person and Mom from just them being here no matter how long that is.

Hugs

If you feel well enough to carry a baby to term then I would got for it!! Children are such a joy and a blessing. I was diagnosed with RA in 2009, 6 weeks after my last baby was born. I think I might of been developing some joint issues before I got pregnant with her, but then once I was pregnant those pains diminished and weren't that bad.
I feel like having kids is one of the best things I have done in my life. They give me such joy and I am so grateful for them.

I agree someone should smack that doctor that told your parents thay shouldn't have had kids, what a creep.

Take care,
Sheri

I have had issues and pain in my back and left SI joint since I was in High School. My dad and my brother were both diagnosed with AS, but I wasn't because I'm a girl, even tho I am HLAB27+. Stormy, that is interesting because If I would have had that diagnosis the first time I was in the hospital with the back pain, my brother and I both would have had the diagnosis as teens. I was finally given a diagnosis and proper treatment this spring. (oh what a long trip it has been!)

I had 3 children over the years, and I too felt great while pregnant with significant reduction in pain (tho those low back-back aches remained). I delivered them all fine, but labor was back focused and long, but you know, they were all worth it! So far my boys are fairly healthy (one is hearing impaired and has gout at 24!) but what a joy to have them and now a grandson. I'm glad I'm here, even tho I have now been diagnosed and the symptoms have increased lately and knowing what I know now, I wouldn't have changed my mind for anything.

One thing I think about that I want to share with you is that even tho these diseases have been with our families for so long, the understanding and treatments have improved greatly. My dad died from lung complications and was fused in upper back/neck when he was 39. Imagine. That was 1971. My brother and I both struggle with various issues but are functional and tho not very flexible, we have fairly normal lives. I can only hope that care, treatment and understanding will increase with time.

Hope this helps!

Funny, I don't know the odds and when we were planning to have children, I heard very different probabilities from different Doc's. SOme telling me that in my families case the liklihood was high to a fraction of a percent from another Doc.

My mother has AS, her mother had AS so the genetic predisposition is there and strong. In the end the overiding consideration is that I love every second of my life both good and bad, pain and pain free (whatever that was) and hope for healthy children but know if I raise them well they wil be joyful caring folks.

FOr nine years the three of them have been a bigger blessing or gift or whatever word you can use than I could ever have imagined. There have been moments when one of them has shown signs of potentially having some problems with AS or Crohns already but perhaps that's my anxiety. In any event those moments of fear have never made me o rmy wife regret our decision.