I actively participate in online discussions, support groups and FB pages. Here are topics that I feel very passionate about and hope that my thoughts contribute to the understanding and acceptance of the very complicating and far reaching disease. Ankylosing Spondylitis touches every facet of a suffer's life. You never feel like you master the ability to cope with AS because the fight is always changing as new complications and life situations arise.
FB support group question:
Linda*: "Guys, so the questions arises, does a person male or female should bring a child into this world knowing very well that they suffer from AS and that the child might meet the same fate ? My apologies if this sounds a bit offensive to anyone but I'm asking because my father had it and he was aware of it."
Michelle*'s statement to Linda: I'm pregnant right now. I was diagnosed 1 week after finding out I was pregnant. I went for genetic counseling and was told I have a 6% chance of passing it to my unborn daughter (a 10% if it would have been a boy). Those are pretty low odds. However, I think that I would have gotten sterilized if I knew I had this disease. I will be getting my tubes tied after my daughter is born.
Linda I think what you are asking maybe is what would compel a person to take the risk of passing it onto the next generation. I am not sure we can answer such a personal question for you...that being said I do have some thoughts I would like to share specifically for you and thoughts I have specifically for Michelle regarding being pregnant and wishing she was sterilized.
For you Linda I think it would be helpful for you to know that despite the latest research on the HLA-B27 gene there are so major holes and unanswered questions about the genetics of Ankylosing Spondylitis. I have had active disease since age 8, dx at 28 and I do not have ANY of the genetic markers recently discovered. The majority of HLA-B27 carries NEVER get AS and then there is a whole population like myself that has none of the genes and have very active disease. So even though the research is pointing to a genetic conclusion it still is in the infancy of understanding. Any time you have a child so many genetic aliments can arise...so many things can go wrong its amazing that the human race is so successful. So I think the deeper morality question you are asking is if disease should be allowed to continue. I have thought about this for years and what I have come up with is that despite the ugliness and pain of this disease...I have gained so much more than it has taken from me. I have an appreciation for life that most people never achieve or don't achieve until they are terminally ill with no chance to "live like they are dying". I have a son who is 8 (I had him before I was diagnosed) and yes I have thought about the burden I will carry if he does become symptomatic...but I also know that my son is so much more advanced in what truly matters in life...has a greater understanding and appreciation of health and AS gives us an opportunity to tackle the large questions of life that seldom get asked. Don't get me wrong...I choke back tears every time I have to change plans or disappoint him because I can't do something "normal" moms do...but I find comfort in the fact that when I can "do" I "do" SO much more than other moms...and we all have a greater appreciation of that moment. So I think only your dad can really answer "why" in a way that will satisfy you...if my son asks me "why" in the future my answer will be simple...because if I didn't there would have never been you and you are worth the price.
Linda: Rachel , appreciate your thoughts. To be honest with you I cant stop myself from blaming my dad for it, hence the question.
Rachel: Linda I know...I could tell from the gentle way you were asking. Unfortunately this is such a deep emotional topic I don't know that we will be able to heal that for you. Surely you think you life is worth it no? All the things you have done and bring to the world? Even if its full of AS crap and pain? The understanding of this disease has dramatically changed in the past 5 years that I doubt your dad even had good information to base a decision from then...and even so I am sure he feels as I do about my son that his contribution to the world far exceeds the potential of lifetime pain.
For you Michelle...all I can say is what crap timing. I can't imagine the emotional turmoil of being dx and finding out you are pregnant at the same time. Please read my post to Sandeep and understand that the medically community only has a toe in the door to understanding the genetic component of this disease. The understanding of what causes AS is SO limited that the primal research of HLA-B27 is the only thing to fill the void of information. I am HLA-B27 negative...my family is negative...we attempted to particpate in Dr. Revielle's genetic research in Houston but didn't qualify because we were negative. So please take it with a grain of sand...they are hunting down this gene while ignoring the the folks that disprove their theories...food for thought. I had my son before I was diagnosed with AS but my decision to have him or not would not have changed. This disease can be really awful but in my opinion...we all die...from something. We can't stop disease or eliminate it...and if we could what would our society look like? Would we appreciate life? I am an artist that focuses on black and white. A white picture shows nothing...a black picture shows nothing...a perfectly balanced black and white picture is nothing less that stunning. Sorry for the deep thinking but it's a deep issue that requires deep thoughts. My son pulls me through my darkest days and if he should end up with AS what better person to help him through than his mom?
Rachel: Jane I completely understand your worries and anxieties..my husband and I have tried unsuccessfully for 8 years to have another child and I am at the point now that it is no longer a good decision based on the medications I take and the ability to keep up. Just keep your chin up know that AS moms literally kick ASs and give our kids a greater understanding of life. Behind every great person is a story of overcoming...or a parent that was sick...our kids will "get it" so far ahead of others they will benefit emotionally, socially and economically.
Rachel: So one of my coping things I do is to look to others that have it so much worse and do so much more that it just takes my AS straight out of my equation...if you haven't already heard of Mattie Stepanek and his mother Jeni Stepanek I invite you to Google him. He takes why me? Why us? right out of my life. I also once heard a speaker who had Cystic Fibrosis and described it as "I have the gift of Cystic Fibrosis and I would appreciate it if you didn't pity me because I don't need it or want it...I have nothing to be pited about," major paradigm shift for me