Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Question for husbands with AS

Dawn,

they do n't know what the genes actually are for AS HLA B27 is now only thought to be 16% of the subsectabilty and I'm a B27 -ve as well.......so in the future all the genetic risks will need to be recalculated.

Good luck with the rheumies etc and the colitis,'

David

Hi Mnann,

It takes a lot to offend me. I do appreciate all the variouse responses that I have gotten from this subject.

My husband and I have a lot to chew on. :)

Thanks
Dawn

hi dawn!
glad to hear you are going to speak with the doc about this. my oldest who is almost 11 i had only a bit of problems. i had problems since i was a kid but didnt go full blown till birth of my 4 yr old and much worse since my 16 month old's birth. would i do it again? in a hear beat. they are my little guardian angels. without them and art i would feel the battle would be so much harder. so it is a blessing in disguise. but i wasnt on meds during that time.

one thing i did find out that i forgot to mention is that i had several miscarriages after my 11 yr old was born and my ob mentioned this time around that he believes the autoimmune disease played a BIG factor as the body attacks it's body. so thats why he thinks that would happen in my case. not saying in any shape or form that would happen to you. he also had me on prenatal vitamins fro 6 mos before trying. there are so many meds that there is not enough information on long term side effects so it's safe to be well informed.

take good care and let us know what the doc says



Adios!
Buggie

Hi

I have been following this thread with intrest, some answers I dont agree with, and others I do.

I just want to tell you our story.....

I do not have AS. My son Eric does. I also have a 23 year old son that does not have the disease.

Eric was 9 when he was diagnosed, and he is the first and only one in the family to have this disease, he is 14 now.

We have had our (really, really) bad times, and now our good times with AS.

Upon testing, I found that I am positive for the HLA-B27 gene, as is my mom. Neither of us have AS.

Just because your husband has the disease does not mean that your child will have it. It is a small chance that they would get it.

As my story shows....A child can get it even if neither parent does.

Ask Eric.....would he rather I not had him if he knew that he was going to get AS (and later Crohns)? His answer is no. He is glad to be here diseases or not.

It is totally up to you and your husband to decide if you want kids or not. I understand the fears about the meds situation. This is something that the two of you need to sit down with his doctors, call the manufacturers, and do your own research to decide.

Me....had I known when I was pregnant with Eric that I wouild go through the hell, that only a parent of a child with this disease can go through...I would still have him.

He is a wonderful child that (most of the time) lights up my life. He is a teenager, so he does have his days.....but the good far out weigh the bad.

I tend to ramble at times, so I will stop now

Good luck with your decision. If you dont mind...let us know what you decide.

Hugs
Lori

Hi,

Sassy I hear what you say, and I encourage Dawn and Matt to assess their risk and get really good advice.

My story is I have had 3 children, we lost one at 22 months and William my oldest is developing full blown AS, the bowel thing seems well controlled on diet......

My second wife has had a number of miscarrages since my disease has become more active, this is proabably an age thing, B27 -ve tend to go full blown as they hit 40. This was prior to starting any meds. The feedback we had was that the wiggles were probably damaged.

I would not want anyone to got through the pain that we have been through, loosing a child demised pregnancies and the financial and care stress we have been through. Pattra wife number 2 is quite affected by the loss of the last pregnancy.

I've had too much contact with families that have children with Colitis and some who have lost children to beleive it only happens to others.

Colitis in kids can be a life threatening disease and have chatostrophic health effects in childhood, including colon removal which is a huge operation for an adult, and developmental issues plus the risks of the side effects from the serious drugs the children need (I know Eric has had some rough times and I consider Chrons'more severe than Colitis in many cases).

AS as you know in childhood confers a very high risk of high disabilty in early adulthood. The bit that concerns me if I had more children is the risk of other auto immune disease as well as a birth defects. AS and Colitis are not the worst ones.......

Another factor in Dawn's case is both she and her husband have IBD as well as her husband having severe AS.

HLA-B27 is now only thought to contribute 16% to the subsectabilty to AS........as such much of what we have been told read over the years about HLA B27 being "the" gene is now up in the air.....the IBD genes are included in the list of other likely genes. However no one can refute the risk of B27 in AS and other associated auto immune diseases, but even if Matt and Dawn are both B27 -ve their risk of having a child who is Auto Immune is higher than the norm. Risk of one parent SpA/AS Bb27-ve is < 1%, however in Colitis it is 20%.

I think the one thing I would have changed, I would loved to have my children years earlier, when I was working and earning good money and much more active. however that does n;t fix my son.

Lke I said before statistics mean nothing if it happens to you/your children and I no longer walk around thinking thses things happen to other people.

David

The classic data on Inheritance risks in auto Immune disease

http://www.genetics.emory.edu/pdf/Emory_Human_Genetics_Autoimmune_Disorders.pdf


Some others:
http://www.living-better.com/understand_inheritance.shtml

I have seen IBD linked with damaged wiggles in men when the disease is active.

http://ibd.patientcommunity.com/links.cfm?parentcat_id=64&cat_id=64

Always got some good stuff, read the Mehtetraxate entry. 5ASA is the same as salazapyrine whithout the sulpha, I think the sulpha is linked to the mens wiggles getting culled back a bit, but it is supposed to be reversible if it does happen.

Infliximab is remicade(?)

David

Edited by davo on 12/15/04 09:48 PM (server time).

Edited by davo on 12/16/04 01:07 AM (server time).

Dave,

I think we need to agree to disagree on this one.

I have a girlfriend that is very healthy as her husband is. They have had 3 mis-carraiges.

The last one, I brought her to the hospital, as her husband was a couple hours away. I laid on the bed with my arms around her crying with her until her husband could get there. I know the heart break it can bring.

This same girlfriend has 2 very healthy kids from a previous marraige.

Ask a parent with AS if given the choice they would not have their kids had they known that they had AS, and their kids had a chance of getting it.

I think that you will find most will state that they would of still had their children, as the good far out weighs the bad.

There are a lot of parents that have the disease that still opt to have children, and go to great lengths to make sure that they can have them. That speaks in volumes.

The up side of that is that you know what to look for, and get early treatment. With the new drugs out there today, they can live a perfectly normal life. Eric does now.

I also understand that we don't know what the Enbrel he was on, and now the Remicade will do to him in 20 years.

If we find that he can not have kids because of it, then we will deal with that then. At least he has a life now that he can do what ever he wants to do with no limitations.

I know that there are people out there that dont want kids that are healthy as horses, but I dont think that you should rob yourself of the experience of parenthood just because your child might get a disease. That same child might also be the one to find a cure for the disease.

As I said when I started this book...this is something that we need to agree to disagree on.

Take care,
Lori

Lori,

I do n't disagree on the great thing that children are or the joy they bring to your life.

Dawn and Matt have as much a right to having a child as anyone else does, and I really hope they are successful and have a 100% healthy no problems baby who grows to be a fit and strong adult without a sore joint or a tummy problem, but with 2 parents that chance is less than with 1 parent with colitis.

However Dawn is assessing her risk which is with 2 parents with colitis, and 1 with AS. The risk for passing on colitis is nearly 20% in the paper I posted but varies from 8-30 with a single parent.

Colitis research lags behind AS and Chron's remicade enbrel etc are not effective.........they only have candidate genes , and not all colitis people respond to 6MP or imuran and MTX is not much of an option.....which means colonectomy which is not without risks.

Hence I shared........

david

Hi,
Being on Remicade may be a good reason to consider good medical opinion. But having AS, in my opinion, is
not a good reason for not having children. Children are needed to overcome the stress that comes with
a chronic disease. A happy mind can some times send the disease to remission or total cure! There is some chance for passing the gene to the offspring, but that does not necessarily
transmit the disease. Even if the child should get AS, there is good possibility it may be a mild one. Even if it turns to
be a serious case of AS, I think technology has improved enough to ensure quality of life.(pardon me, serious AS sufferers!) And down the future, who knows there might a cure for AS and other auto immunes (by the time the kid gets AS), The child can also get AS without a genetic link, so just having AS alone may not be a good reason. It is worth weighing the pros and
cons for some time till you can feel you are taking a right decision! Good Luck!

Ram

Dave,
I did not think about UC..2UC + 1 AS is real food for thought. Definitely increases the risks. But might still be worth it.

Ram

Ram,

I know, thats why I posted....

David