Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group In the genes??

I've been doing some reading and saw something that bothered me. According to what I read, AS is genetic. I don't know if thats true or not, but if it is, I have a 9 year old son and don't want to pass it along to him. My question is, should I have him tested and if yes, then when? Don't really want to put him through the trauma of that now, and he isn't complaining about any pain yet. Then again, it took me til the age of 25 before I realized there was something wrong. At least if he is tested someday and they find him positive, he'll have more of a heads up than I did.
Don't want to keep rambling, but if anyone has an answer, please let me know. Hope everyone has a great day.
Glenn

new_as_kicker

I would get him tested w/o a doubt. And then tested again later...

The onle reason the doc knew what to look for with me and my neck problems is because of dad's AS.........

Christine

Some days I feel all rung out...

Glenn,

AS is not always genetic. There is a genetic marker that predisposes one to AS (HLA-B27) but if you have it, it does not mean you will get the disease. Conversely, if you do not have it, that doesn't mean you WON'T get the disease. So knowing whether he is HLA-B27 positive or negative really does not tell you much at all. I would watch him for symptoms. I would not test my child, due to the fact that the test is really has little bearing on whether or not s/he will get AS later.
Then again, I am not a parent..


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Kristin

TODAY IS NOT A DRESS REHEARSAL!!

Hey Glenn -

Genetic testing - even just for HLA-B27 status is something one should consider carefully. Like Krystyn has said, even if you are HLA-B27+, that isnt proof that you will get AS. As a matter of fact, there are many more people in the population with the gene than those who feel the genes effects. Knowing that your child is HLA-B27 positive is would unlikely change how you proceed, given that there is no unrefutable proof for what triggers AS in a HLA-B27 positive person. As all parents with AS do I'm sure, you'll watch normal injuries and joint problems over the years with increased concern. And, (god-forbid) should the day come that you are thinking about a diagnosis of AS for your child, you'll be better armed and more prepared to make the diagnosis early. Your son already has more of a head-up than you did - by the virtue of your diagnosis, you've made everyone well aware of things to watch for.

I'm not from the US, but something else that I would think about is the legalities involved with releasing HLA-B27 information to things like insurance companies before having my child tested as well. Especially when the test cant rule anything in or out, it would seem to me to be dangerous information to have 'lying around'.

Good luck, and best wishes to you and your son.




Jeanna

Hi Glenn,

to try to explain a bit about my family history about a/s is that my dad has the gene but never had a back problem in his life....specialists say that it is genetic but my dad is only the carrier....i have 2 other brothers all all us 3 have a/s and we do have the symptoms. I had a 17 year relationship and never had kids of my own. Am now seperated and re married last summer. We are now trying to have a child and in a funny way it's quite scarry cause i don't want to have a child that might have what i am going trough but the doctor tells me there could be a big chance that he can be a carrier of the gene but not have any symptoms...so we are giving it a try but it's still scarry. Yes you should have your son chequed.

Michel

This is the way I look at it: Without the gene, a child can still get AS (this is the case with me). So it's really a gamble either way. Since we have learned so much as sufferers, I feel that if I have a child who God forbid has AS, their life will be much easier than mine has been.

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Kristin

TODAY IS NOT A DRESS REHEARSAL!!

I can only echo what Strutsy said, even if you have the gene the odds are small (I think around 2%) that you will actually develop AS, it is still rather an "orphan" disease - - or an exclusive club? And that insurance information can follow him around for life. I think it's better to watch for symptoms, joint aches and stiffness that are not normal in a child, early back or hip problems, and then you can seek medical advice and attention, but not put up any red flags until you have more to go on. Hate to think of your child growing up and having to hassle with insurance companies or buying insurance against disability and being turned down because he happened to test positive for the gene a long time before. I have AS and have no clue if I even carry the gene, the DX rendered a test unnecessary, as AS can affect folks who don't.

Cheryl


Dogs know the meaning of faithfulness

I understand Krystyn but it's still scarry cause i went trough hell when i had surgery and i don't wish this to anyone not even my worst enemy, i hope you understand what i mean. But we are still going to try to have a child, time for us to try now cause i'm 39 and the wife is 32.

I will also echo Strutsy. I am a parent, I am + HLA B27 and my rheumy told me that there was a 50% chance either of my 2 kids would have the gene, 25% chance neither would and 25% chance both would. He encouraged me to have them checked. I thought about it, but decided not to after reading up on AS.(what is it.... only 4% of those positive for HLA B27 will develop AS?)
I decided to watch them closely for potential reocurring symptoms and take action then.
I didn't want my children to think every little ache and pain means they have a lifelong rare disease. I'd like to think maybe my kids can grow up first healthy, but then innocent and ignorant of this disease. So for now, I'm watching and I'll keep my worries to myself until the appropriate time comes.
Darla

Dear Glenn:

I don't want to start a controversy, but as far as am concerned, getting yourself tested for the MHC B27 is first on the list. If you have it, testing your offspring might save you grief in the future:

Suppose that we could actually induce AS by taking NSAIDs (that the pharmaceutical companies seem to want to pass around like candy now), and even exacerbate it by eating too many starches and fried foods. It would be nice to know whether AS could be avoided--and the chances are statistically significant (at least twice placebo effects) that it can--and then modify behavior accordingly.

Many more people suffer with mild AS (sub-clinical) than are aware they have it--about 25% of all people who are B27 positive have some AS-related episode, but about 8% develop into severe cases.


Best Regards,
John