Positive AS stories

Some people would view my As story as a nightmare. It is not. I view it as a huge success.

I have AS with fully fused sI joints and some spinal fusion. I had bilateral hip replacements before age 50. Two of my five siblings and a number of my cousins have AS or another form of Spondyloarthropathy. As many here know, all three of my children have been diagnosed with various forms of Spondyloarthropathy. My youngest (now 17) is the most severely impacted with bilateral SI fusion and chronic iritis that is so severe that he has ended up hospitalized for IV steroids twice.

When I was diagnosed, I chose to treat my disease aggressively as I had small children and two teenage step children who needed a fully functional mom. I was on Enbrel (via a clinical trial) before any of the biologics were FDA approved for Ankylosing Spondylitis. I had immediate response to Enbrel and it remained my miracle drug for years. I tried Humira - which was ineffective for me and I have been on Remicade now for many years. I have never experienced serious illness or infection. I have not had severe negative side effects. Anti- TNFs control my disease well and I am able to do anything and everything that I want to do. I work full time, travel extensively for work and pleasure, helped to care for elderly parents until their deaths, take care of my family, and I successfully shepherded three kids through adolescence with chronic diseases. I do not consider myself disabled in any way. I am still able to run several times a week and do yoga.

My kids were all diagnosed as young teens - and my youngest even earlier. They have each experienced a variety of complications and additional health issues. Both my boys have progressed from juvenile Spondyloarthropathy to definitive AS with the younger having fully fused SI joints. My daughter has more stiffness and related side issues, but, so far, no signs of fusion. We chose to treat their diseases aggressively and currently all three are taking Remicade - the youngest at an unusually high dose every 4 weeks. We have encouraged activity, organized sports, tons of stretching, healthy balanced diets, good sleep hygiene, good psychological care, travel, fun, laughter, and a positive attitude.

I consider my children to be hugely successful. My daughter teaches yoga part time while completing her education more than full time. She is currently in her final year of a 6 year combined BS/MD program. My older son attends a prestigious university and plays club sports (football and lacrosse). My youngest is now a senior in high school. Although he has struggled the most with his health, he has the most upbeat attitude of the three. He has no intention of allowing his disease to dictate his life. Ry is in the process of applying to colleges now. His grades and test scores should allow him to go wherever he decides he wants to go.

That said, my life and the lives of my children have not been magical or perfect. We have each struggled with PAIN, disease progression, side effects of medications, surgeries, set backs, and disappointment. As a parent, I have had the crushing experience of watching my children suffer with a disease that they got from ME. We have each had to give up dreams, change plans, or find a different way to accomplish our goals. We have done well because we have treated the disease as aggressively as possible, stressed activity and exercise, gotten excellent psychological care, ate well balanced diets, and most importantly - fostered and maintained an excellent can do attitude. We enjoy life. I am enjoying watching my two oldest fall in love and move on into adulthood. I am thrilled that my youngest is excelling academically and dreaming of his future. The best advice we were ever given came from the psychologists in a pediatric pain rehabilitation program. "Don't ruminate on it. Live your lives." We will continue to do everything in our power to follow this advice.

Not Me Too!