Hello, my name is Gretchen Bergman and I was diagnosed with A.S. at the age of 46, I am now 55. I grew up in Maine, and have lived in Connecticut for almost 35 years. I am divorced, but in a good relationship, and have 2 grown children who are my pride and joy! Drew is 27, and Katie is 26, and are both smart and terrific people! I will tell you a little about the progression of my disease..it’s been a long haul, and I am still learning more about this disease all the time. A.S. is a painful, progressive. autoimmune, inflammatory arthritis which primarily affects the spine, neck and pelvis, particularly the sacroilliac joints, and can also affect anywhere in the body where tendons and ligaments attach to bone.The inflammation at these joints is called enthesitis, and after years of inflammation, it turns to scar tissue, and then can turn to bone, or fuse. this causes great problems with mobility of the joints in the spine, neck, pelvis and ribs. It can also cause problems and damage to the eyes, the heart, the aorta, and in some cases the ears, or loss of hearing. also it seems to hit people differently, and the progression can vary greatly, person to person. My disease affected my feet first…I had bilateral achilles tendonitis for 10 yrs straight, from age 30-40. prior to that i had diffuse, generalized achiness and headaches. At around age 40 i began having more pain to my neck chronically, and my thoracic back…and after a work related back injury at age 46 I had an xray by my orthopedic, and it was then he told me I had Ankylosing Spondylitis, the first time I had ever heard that term, and had never known anyone with it. 95% of people with A.S. share a gene marker called HLA-B27, although there are people with the disease who test negative for the marker, or have a similar” spondyloarthropathy” possibly.It is thought that somehow, having the marker and being exposed to some unknown trigger in the environment, sets the disease off in some people. Not all people with the gene marker develop A.S. I believe I got this disease through my mom’s side of the family..my aunt had a horrible back for years and was told she had degenerative disk and joint disease, but was never given the diagnosis back then, as it was thought that women didn’t get this disease, only men did. This left alot of women with either late diagnosis, after the damage to the joints was already done, or no diagnosis at all.We had my mom tested for the gene at the end of her life after years of arthritic type pain, and she was positive for the marker. unfortunately, she passed away before we could investigate more for treatment. This site is so important for getting the word out so that people will get the treatment they need earlier in their life, before so much damage can be done! After my diagnosis at age 46, I continued to work fulltime, but my disease began to progress more quickly with much achiness in my neck, thoracic back, and then, my lower back in my late 40’s. I did the best I could, I am a nurse, so was always on my feet and by now was living with severe pain daily and trying to keep up. around this time my marriage suddenly broke up, my kids were just starting college, I was working fulltime days at our local hospital, and i was taking care of my beloved aunt who lived with me while she was going through chemotherapy..she was so sick, and i was able to care for her for 6 yrs with her various health problems until, sadly, she passed away. Right after this, my mom had a stroke and suddenly was unable to drive, and shortly after she was thought to be showing signs of confusion…she lived alone with services nearby, and we were able to keep her in her home for quite awhile until her safety became an issue, so for the next couple of years I took over her checkbook, meds, services at home, and taking her to all her appts. during this time, my younger brother died unexpectedly and we had to get my mom through this and the funeral we had in Maine, where he was from. It was very difficult, but we were able to give my mom some quality time that week in the state that she had loved so much…we got through the loss together somehow. After this, my mom’s confusion got worse, and after a month in the hospital, she was diagnosed with Alzheimer’s and vascular dementia..and we finally found a good facility for her after 3 other places failed to help her. Unfortunately she passed away last year after a heart attack and stroke. We miss her everyday, and we now know that she had suffered all those years with A.S. too, but had never been diagnosed. I continued to work as a nurse, and switched to nights as the pace was easier, although i was suffering more and more. Last October I was laid off due to a floor closure, and after much deliberation, decided it was time to file for disability as i was having an increasingly harder time trying to get around and knew my disease was progressing quickly. i am currently still waiting on a decision from the state and trying to get by the best I can. My family has helped me some, and i am getting better at asking for help when I need to..I have been getting treatment for the A.S. for the past several years, and it helps, but I accept that i can no longer work, as dealing with this is a full time job in itself. I know that i have a lot of damage now, and am hopeful that through education on this disease that people will get the proper diagnosis earlier in their life and avoid some of the agony that others have suffered! thank-you for reading my story, and thank you to Cookie for making this site possible!
Connecticut, United States of America