Hi Mega,
I’m sorry to hear of your worries and illnesses. I apologize in advance, as my comments usually lack brevity.
I know you’ve been having a tough time. But I want to let you know I have so much hope for you. First, you are dealing with this head-on. You are also being very thoughtful of what this will mean for you life long. How you treat your health day to day can have a bigger impact on your future health than any other factor. You received your diagnosis much sooner than most. You likely have a great opportunity to to set up a healthy AS daily lifestyle.
I know that’s easier said than done. And it’s frustrating when we learn there are so many things to try. Also, what works for one doesn’t necessarily work for another. I’ve tried many approaches. Stress reduction is the most important for me. When my stress goes up, I get sicker. Swimming, pacing activities and acupuncture have provided great relief.
Regular exercise can really hold down the pain(and depression too). Physical Therapy helps many. Remember to stick to LOW IMPACT exercises only. High impact (like running) puts high stress on your spine and other joints and can cause more problems. I stick to a low inflammation diet. I’ve noticed a difference when occasionally eating inflammatory inducing foods.
As for “genetics”, you won’t necessarily have a similar treck as your older generation. You can choose different diets and activities. Perhaps more important is so much more is known about AS and there are treatments now available that weren’t there for older relatives.
AS effects each person differently. My father never had a symptom in his life, but was diagnosed in his 70’s after he hurt his shoulder. A few of us are severely affected, with scores in between.
As for pregnancy, perhaps you’re putting the cart before the horse... Are you planning to have children right away? Many women with AS have children. Ive heard of pregnancies causing remission, and stories of complications. (Go to any baby shower and you’ll hear similar stories from a lovely pregnancy to scary complications.). I had two healthy girls (1 pregnancy with complications for me, probably not AS related, and 1 with 9 months of morning sickness.) I recommend that as you get closer to planning a family, consult your professionals.
I hope this reply is helpful. For most, AS can be managed. For me, I’m ever grateful it is not a map to death and suffering, like MS or ALS.