A.S. Face 0732: Kristy Cowan
Hello ! My Names is Kristy and I was diagnosed with A.S. in at the age on 14 in the year 1989 . I had never really been able to keep up with the other kid’s and was a very sickly child since birth with alot of stomach problems that keep my in and out of the hospital .Never could run & jump as fast or high as other kid’s . In 1985 one day my left knee started hurting & everyday it got worse & worse . With in one months time I went from being normal to screaming in pain . My leg’s were shriveled up to my chest almost & unable to walk move at all from hip’s down . My Mom took me to the Doctor & they did x-ray’s of my knees first . They were fractured but nothing that would have caused that much pain and the symptoms I was having . So they did x-ray’s on my hip’s , pelvic area . My Hip’s were gone ? Piece of my bone in the pelvic area was sticking in my bladder . i had no reflexes in any part of my body , fever . It was bad and they had NO clue what it was or what to do ? So they did a double hip replacement and with the bar’s down my femur , bone grafts and they fixed my bladder. Let me tell you at the age on 11 to have all that surgery at one time was dumb & they thought I may not make it cause everything went wrong it seemed like. The Doctors should have know better ! I spent over a year in the hospital . They ran every test they could think of to find out what I had . Finally 4 years later with a wonderful Doctor William Head of Dallas Tx, he found out I had HLA-B27 & A.S. I have been tested 6 times with other doctors because they say only Men can get it lol ! So sick of hearing that . Plus knowing more about A.S. than most doctors ? Crazy !! Dr. Head retired 😦 He did surgery on me & I was able to walk for the 1st time in 4 years 🙂 Now at the age of almost 38 . I have had 16 hip replacements . Last one was 7 years ago and I need both hip’s replaced again now & a knee replacement , bone graft’s 😦 The cr@p never ends let me tell you ! I was thankful that it effected my hip’s knees , ankles and not so much my back . I have scoliosis, osteoporosis , that has gotten much worse . About 11 years ago the A.S. started effecting my back much worse . Now I am unable to sit for more than an hour without having pain so bad I can’t take it ! I can only walk , stand for 5-20 min. If I take my pain killers & muscle relaxers I can stand for an hour 🙂 sometime more with my walker ? My story is so long and this is just a small amount of it . I also have alot of stomach problems IBS . My goals are to do everything I can to stay as healthy as I can & in a good frame of mind ! As everyone knows that has A.S. everyday is different . Also ever person with A.S. is different with symptoms . I can’t plan trip’s , dinners on & on because I don’t know if I will be able to get out of bed or what my pain level with be ? It’s day to day hour to hour & sometime min. to min. ! I want more than anything for a cure ! I have only met 1 person who had heard of A.S. & 1 e.r. doctor ! We have to get the word out to everyone ! AWARENESS IS THE KEY TO FIGHTING THIS & FINDING A CURE !! Every time some one ask me why I’m in a wheel chair or if I’m just talking to people in doctors offices ext, I tell them all about A.S. !
Sometimes my depression over takes me . Being I just moved to a new city & state I have no friends here . The friends I do have where I moved from don’t understand . I would love to have just 1 friend to talk to about this that has A.S. ! Please if anyone else feels like they need a friendly ear someone to talk to about what your going through please contact me !
My e-mail is firstname.lastname@example.org . Thank you for taking time to read my story
California, United States of America