2nd Generation AS Patients: Passing The Torch
Question for those with AS who have children who were also diagnosed:
How did you explain to your kid(s) what AS is and what to expect?
I don't have kids BUT I am the third generation with AS. My grandmother, my dad, and me. My aunt has it, and my uncle had psoriatic arthritis and Crohn's. It's one hell of a HLAB27 marker! No one explained anything to me. My dad mentioned neck surgery when he was young to fuse something, but basically, they haven't talked much about it. It seems I am the most afflicted. I have mentioned passing AS to hypothetical future children to my partner, but the chance is about 20%. We'll see. It certainly sucks. Thanks for your insight! Yeah, it certainly does suck. But, should I ever have kids, if they develop AS, I'll be happy to be their guide through the majestic world of Spondyloarthritis!
I have a son and daughter both with AS. They are both adults now and are experiencing the symptoms, my daughter is worse than my son. Both in their 40s now. Both were active in high school sports as was I. When it became apparent that the also had AS, started stressing to them to keep as active as possible. For the most part they did but life and families caught up with them. After my strong recommendations they both see a rheumatologist. I try to not complain around them too much and just hope their illness is milder
Hi Katie, this is one of two of my first posts on this forum.
Both my son and my daughter played varsity HS basketball in Texas. So nothing was obvious at that point. Although I could see some difficulty with my daughter playing as a senior. But i hoped it was my imagination. Both are in their 40s now. Probably started clear symptoms in their mid 20s. Which was when i first noticed problems. I still try to emphasize to stay moving as much as possible even if I don’t always follow it myself. It has gotten much more difficult to stay active. I now have a broken back and two hip replacements and a fused foot. She has both hips replaced and recently had another hip surgery. He has had bone spurs removed from both heels. We forge on.
Thanks for responding to my post.
We are so glad you found this community and truly appreciate you sharing your family's story. I'm saddened to hear how AS has affected your family. I'm sending all good thoughts your way as you recover from your broken back and hip replacements and your daughter recovers from her hip surgery as well.
Warmly, Doreen (Team Member)
I just had a baby last year, and my husband has AS. I'm very nervous for her, and I'm not sure when we should get her tested for the genetic marker. I know girls are less likely than boys, but I still worry.
Auldyn, I hear you. Do you want to test her for HLAB27 even without reason, or will you wait and see if she has symptoms? I don't have kids so I guess it must be tough. But even if she's positive, it may not express itself. I'm sorry you have this worry.
I have vitiligo, another auto immune disease. My son has had back problems since his 20’s and now has vitiligo. I just know he has AS and hate that for him. He has not been tested.
Chuzzy,
I do hope your son will find his way to a rheumatologist if he needs one. I am sure that with your help he will realize the need for an in depth consultation.
Rick (Site Moderator)
