Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Can people with AS get married?

I am new to the forum.

I am a 31 year old indian AS patient (my dad had a short burst of psoriasis and cervical spondylitis) and a computer scientist. First diagnosed that i am HLA-B27 +ve when i was 16 years old because of a very bad pain in the hip (sacroiliac joint). It lasted for 6-12 months off and on (probably bcos no one knew what it was). Then i had uveitis after 5-6 years. About 4 years after that i had a pain in my ankle (which im not sure was related) that was treated for 2 months and subsided. Now after 5 years again i have a flare-up -- started as negligible stress in lower back, the rheumatologist did a blood test for inflammatory markers, there wasn't anything but she asked me to use an NSAID (indomethacin) anyway for 2 months. A month later i noticed pain in the knees (but nothing in the lower back) and some soreness in the middle of my spine. She asked me to switch the NSAID to aleve bcos of side effects with indomethacin. I'll see wat happens.

Essentially, for me its been a recurrence every 5-6 years which subsides after 2 months of treatment and in between i have been quite healthy almost like everyone else and been able to lead a normal work life. I din't read up well on AS earlier or i would have practiced a rigorous exercise routine from the start but now i am exercising (stretches, yoga etc) 2 times a day and already i am waking up with increasingly less stiffness in the ribs. My posture i was told by the physio is very good.

My recent one month old x-ray that i took before the knee pain said the following:

------------
There is fusion inferiorly in each SI joint, right more than left, with slight sclerosis elsewhere at each SI joint. There is no ankylosis of the lumbar vertebral bodies. There is no fracture, disc narrowing, or spondylolisthesis. No significant arthritis is seen at the posterior facets. The pedicles appear intact.
------------

Given my age, I feel the need for a companion and thought its about time to get married. I really gelled well with a girl and i strongly feel she is the one and she seems to like me too. I told her about my AS history and she read a bit about it online on her own and she is scared with all the grave stories written about the disease. And i totally understand her fear. On the other hand, i feel i might loose her as i have never liked any other girl so far like her.

My questions are

-- Can people with AS and history such as mine get married and lead a healthy marital life? Is it even ethical for me to get married?
-- Will i be able to lead a normal work life or will my wife have to end up nursing me all the time? I don't want guilt trips as it really bothers me the most.
-- Can i have a kid who will be normal?
-- Will everyone with AS for sure reach the advanced stage that i read in all the scary stories i get to see online? Where in the web can i find some comforting success stories?

In a cynical way, I see darwin's theory of the "survival of the fittest" coming true.

Sorry for so many questions. I feel very worried and concerned now a days and i am looking for some comforting stories.

Absolutely we can get married!

I've been married twice!

Genetics are difficult.

If I had known that I could pass on my arthritis combined with their father's severity of alcoholism added to my sisters severity of depression to a child, I would never have had children.

One of my children died from suicide as a result of the extreme physical, emotional, and social stress of that horrible combination of diseases.

My other child is nearly perfectly healthy in every way, for which I am overwhelmingly grateful. I do fear for his children though.

It's not that I would only want healthy children mind you. It's just so awful to witness your own child suffer, know I am responsible genetically, and not be able to help.

All that aside, I've been blessed with mostly good health in my 54+ years regardless of my diagnoses. I've had a periods of gruesome symptoms like most everyone here, one lasting several years.

There is no "crystal ball", and my feelings are by no means the last word.

Given to do over again I would not take the risk of passing on such severe pain to my children.

I would however adopt MANY children!

My whole family has arthritis and three of my brothers have been diagnosed with AS and Crohn's disease. They all married and have children.

Only my son has developed arthritis-- and I have very little arthritis and it is not AS. None of my brother's children have arthritis.

So, hey, just go on with life. Anyway, there is no predicting anything for sure.

And, medical treatment is getting better all the time. Any children that develop the disease will benefit from all the progress.

This is not a reason to not marry or not have children.

If your computer was to decide, given all the statistics. What weould it determine?
I think you already know the answer...
man to man, I no way would even consider signing a legal document.
been there done that..... Twice
The stress of divorce, which statically your putting your already shaky future on the line. Then if you have children, consider yourself a slave of the state for the next 20 years.
I think given your age ect...
I would financially support a child, but i woul not legally ever sign any legal document. no way would even risk passing on " my life "

Absolutely, get married when you find the right person. I come from an extended family where every adult has one or more autoimmune disorders, and just about every adult and quite a few children have some kind of inflammatory arthritis (JIA, Stills disease, AS, PsA, RA). Like anything else, you find a way of living with it. I hear a lot of people regret that they can't run around with their kids, but my mum never did, and it didn't make her any less of a parent. In fact I think she spent far more time with us than many of my friends parents and I still have a great relationship with her. As a child and young adult I didn't know how badly either of my parents suffered at times (dad with AS, mum with RA) until I started getting bad myself - partly because their disease was fairly well controlled most of the time (and this is pre-biologic days), and partly because they just got on with life. At the back of my mind I think I grew up knowing that I'd probably end up with "arthritis" as it "ran in the family", and mum has told me that she is very sorry "she gave" inflammatory arthritis to me, but I don't hold her at all responsible. Some families have a lot of cancers (mine doesn't), some families have a lot of heart disease or strokes (mine doesn't), and some families have autoimmune diseases. I didn't have kids, but the reason for that choice wasn't anything to do with my disease.
Be honest about your limitations - what you can and can't do right now - without ranting on about the disease or what you think the prognosis might be. The right person will accept you as you are, and grow with you as things change. Also, instead of reading the bad news stories about AS (which may be the tip of the iceberg), seek out the good news ones - the stories about folk with AS whose disease IS well controlled, and who haven't got to the stage of permanent damage, or severe disability. Those folk do exist - its just that you don't usually see them needing online groups like this. My father would have been in that category. It wasn't until he was in his 60's that I even realised his "bad back" was AS, and that his morning walks were part of his exercise programme.

Life is unpredictable, so we must just live it.

I've been married for 24 years to a wonderful husband. I have health issues, he has health issues, we are a team, we help one another out. Health issues can make one more empathetic and that is a good quality to have. Perfect health does not a perfect partner make.

If you have found someone that you love who loves you, and you get along, enjoy one another's company, and want to be together, than I'd say go for it.

As for children, we never did have children, but for us it wasn't really a decision one way or the other, it just went from when to if to "I think I'm too tired to have kids." (a combination of health stuff and career stuff) and then the time had passed. We don't regret not having children, we have a full life. But too, I can see that if we had had children, that would have been a good life too.

In my family, my aunt (my mother's sister) and I have really struggled with health issues. Others in the family much less. So there is no guarantee that your children will struggle with health issues necessarily; look at your family to decide the statistics for your family.

And too, even with health issues, we all here still lead as full of lives as we can. We get married, have children, have careers, have hobbies and interests and do what we can to get on with things best we can.

Congratulations on finding someone to spend your life with.

My marriage is my greatest treasure.

cool-are you American native or Asian indian?

Telling others what to do or not to do is a slippery slope and often later a very thankless job.
If we grow together in learning loving and forgiving, it is absolutely the best gift given to us. Not everyone can do that. Some of the most mature / happiest people have pain and disabilities.
What is it that you want the most and how hard are you willing to work for it?

Every seldom do I see humans not respond to love, but it definitely does happen.

good questions..

I agree with much of what the others have said about how it's possible to still have a happy marriage. I do see where your concerns are... You don't want to just take, take,take and be a burden to your future wife. You obviously love her enough to consider letting her go due to the impact your illness will have on her life. If she loves you that much too, then she prob wouldn't want to live without you, no matter what disease you have, and you should get married, in my humble opinion.

I felt similar concerns before my wedding. I wanted to feel like I had something to offer to the relationship now that I was ill. Then I reversed the situation and asked myself if my husband had my illness, if I'd still want to be married and the answer was HELL YES. So then I realized that's how it is for my husband too, and I needed to stop being insecure about my limitations and realize that I enrich my husbands life and he enriches mine and no illness can change that. I remind myself all the time to be the best I can be for him, and I don't let this illness get to me because I want to be a great life partner for him and most of that is attitude.

As for kids, there is a genetic component to this and there's environment, and who knows what will happen. Autoimmune diseases do not run in my family and I got this, so even under good circumstances stuff is just gonna happen.I'll tell you this, I'd rather exist with this illness than not be born.

Just trust your gut on this one. Also, something that helped me was learning about "post traumatic growth" because it gave me hope that this illness can be a positive circumstance. Good luck!

Thanks a lot guys -- first for at least making an effort to reply and much more for the comforting insights.

Touchwood, if my health for the next 30 years regarding the AS is similar to my past 30 years i would be very grateful. Now, i guess its for her to decide and i would still understand her and wish her well if she decides otherwise.

Can anyone point me to some success stories of AS? I wonder what is the fraction of the people who actually end up in an advanced stage. Has there been a study about prognosis of AS with some statistics?

@Lon I am an asian indian.

I say this not euphemistically,"normal" is in the eye of the beholder. AS is only a hinderance to marriage if you let it be.

I would classimy AS as advanced. I was fused and bent when I met my wife. I never viewed myself as the least bit different. That didn't mean that my appearance and AS didn't scare off other women, but it didn't stop me from meeting the right one.

As for children, my Mom has AS. I could look at my life and think she passef it on to me. I never did. I am ever thankful I exist and am blessrd to have such a fantastic role model and friend as a parent. I hope AS or not to pass that love and life to my children.

Its a difficult personal choice in any life whether or not to marry and have children. From my perspective, AS menaces and threatens to steal so much of our existence,I choose therefore, to surrender nothing to it out of fear. Being a father is the greatest joy of my life. Marriage and parenting aren't easy but in the moments where I get it right it is perfection