Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Son asked a brutal question

My son, who also has AS, was home from college over xmas break and asked me a question I had thought about to myself before. I was not sure how to answer. He is obviously thinking about it

He asked if I had known I had AS and that they, my sons, had a good chance of developing AS would I have had any kids? Now my AS did not show up until I was about 35 and my twin sons were 4 years old by then so this was not a decision I faced. He however is 19 and it must have crossed his mind. You know I did not have a good answer for the question. I am not sure I would have had kids and yet I truly enjoy my sons but I cried when they were diagnosed with AS. He, and his brother, have some tough choices in life.

AS simply sucks

I told our youngest daughter who was the one of our three to end up with all of the pain, etc. that I was so sorry that she inherited that from me and that I feel so guilty.

She said, "Mom, forget that nonsense right now. Don't you think that I had rather be here and get a chance at life rather than never having been born at all." I will never forget that. She also told me that it was much harder on me than her because I had to break the ground and that she had learned how to live with it by watching me all of these years and that she is doing just fine.

I know your sons must feel the same way. I think they had rather be here in pain than not be here. I do understand your feelings as a Mom.

I would take any pain to keep one our daughters, sons-in-law or grands from having it. One s-i-l has AS and is on some of the big gun meds. He did a triathlon last summer and usually does a Marathon every year. He was here this weekend from FL and was in such a big way. He has not let it slow him down. He has lived with it most of his life. He had kidney failure as a child and was on steroids for a long time and then went into this stuff.

Your sons can have a good life and I am sure they will with a loving Mom like you.

I will be thinking of you.

Hugs.
Possi

A thoughtful post, thank you, and so far, knock on wood, they have had a milder AS for about 6 years now but I am still unsure If I would have kids.

even though I cried I am a Dad LOL

This is a huge one for sure.

I was diagnosed about two and a half years ago and my wife and I are trying to conceive. It's been difficult and the disease has made me nearly incapable of having children...that's a whole other story. The question of passing the gene onto another generation is one I have wrestled with myself.

I came across a letter I had prepared for a rheumy that I wound up getting rid of and in it, I gave references to a study that quoted some stats for this very question. It said that a male child would have about 10% chance of getting the gene while a female child would be half that. Of those, as you well know, not all would develop AS.

When I factor in Possi's story, my answer would be an unequivocal YES. It is a crucial question to consider though, we didn't have a choice about getting AS but there is the risk that our children may get it...it's a brutal one for sure. I know I wouldn't...and don't blame my parents for my disease(s).

Wow, this is one I will continue to ponder.

Another one that cooks my noodle is how to deal with a child with AS? For me, I ran myself ragged with one adventure after another. I had two speeds, full ahead or full stop and I charged headlong into every obstacle life put in my path. My life has been one of activity and vitality but I wonder how different I might have turned out if my "growing pains" as a youth were identified as AS? If instead of doing my utmost to not be seen as a complainer or a wimp and driving forward despite the pain, might I have become sedentary, over-medicated and cautious of any sort of physical activity? Then again, I wouldn't be in the amount of pain I have now if I had known....arrrgggh, I don't want to think, I want to have a nap...lol

3 Birth children & 1 Step-daughter

Looks like all 3 birth children will have some AS problems to some degree.

Never a question in my mind.

Lisa

My daughters inherited endromitiosis and poly cysytic ovarian syndrome. They have more than likely inherited it me and my side of the family. I did not know that ran in my family till after my younger daughter had a total hysterectomy at 18. She will never know the joy (and pain) I had given birth to my children. But she has a great outlook on life. I actually posed the reverse question on her. She told me when she is a little older she plan to adopt children and she said she is very happy she is here.My son will probably pass on the gene to any daughters he has in the future. But he says life is a gamble and he plans to live life to the fullest. So If I was to know ahead of time I would have considered it more deeply, but I didn't and I am very glad I have my three wonderful children. They are great people with big hearts. So I think the trade off is good for me. The joke in our family is my son will have to have all the kids the girls couldn't. He says probably not.

from a child's perspective:
from someone who probably has a worse case of what my mother has,
i'm glad that she never considered not having me.

i don't have children and at this point won't (not because of illness though; well, not consciously; more like hubby and i just never felt like it while dealing with chronic illnesses and busy with careers, just never the energy to consider it, or something like that, and then too late, though don't regret either way; can't have regrets in life. just turned out to be a different life than i imagined at the age of 20, but still a good life, just different.) so, anyway, its hard for me to answer from a parents perspective, since i'm not.

maybe ask him the tougher question, "is he glad that he's here in spite of the AS." that may help him answer his own question.

sue

When we were trying to become parents, I never thought about this until someone asked me, still it was not a reason for not having them. They both are HLA B27+ so there is a chance... there also is a chance medicine will be a little further so if the beast shows, we ll have more weapons to fight it!
Of course my AS is not progressing much and I lead a normal life.
I am happy to have them and we ll face it together it it comes!

tiredofpain, thanks for that perspective. I took something different away from your post. At first I was just thinking of my own children and how I wanted them to experience the joys of "full speed ahead" and how I might preserve that.... then I realized I missed that. When I was in just as much pain as I am now, and often more, but thought it was because I was a ninja-gardner, or a killer yogini. I had 5 horses a year ago, and I gave them all away. It seemed so irresponsible to incur the risks when I had such beautiful children, but maybe I'm not being responsible to me. And I mean on the day to day level, where every little pain, that used to make me feel bad-as*, instills some amount of fear instead.

M maternal grandmother had AS. My mother has AS. I have AS.

Because of my AS conceiving became a problem because of all the med's I took as early AS 12 years old.

I knew I had AS and knew there was certainly a liklihood of it passing on to my children.

It will rip my heart out if it does pass on now that I know my wonderful daughters but I don't think I ever hesitated except to see how my wife felt on the issue.

Why?

Well my mother has AS and she didn't know it when she had me or my brothers but I never ever blamed her in any way for it passing on to me.
Despite my AS and all it has and does do to me, so long as I'm here to help and nurture my duaghters and be there for my wife I love my life.

Its the Hamlet question of "To be or not be". I like being here. I believe my daughters whatever happens to them if raised right will love their lives with or without AS.

Any child can be born with a malady forseen or not. Some roads I have not taken I look back at and think maybe I could have went down that path. Absolutely never thought that here. I could not before they were born have thought its better not to have children for the chance of passing this along and now that they are living breathing little souls I know it was the right choice.