Diagnosed in 1995 after a year of pain and immobility. I realize after reading so many stories here that my diagnosis was quite fast. I thank my cousin who was a medical student at that time and we were living in the same city and she suspected some auto-immune disease when I talked to her about my hip and back pain.
Even more fortunate I was that her mother (my eldest aunt) is a radiologist and knew that this was AS, since her sister (another aunt) has it. So when I went to my home town during my exam preparation break (I was in my first year of engineering) she took me to a Rheumatologist she knew and he confirmed her suspicion. I was too young to realize what would follow, but my mother’s reaction is something I remember even now. She broke down into tears. I know now that she saw her older sister suffer for many years and that is why she reacted that way but at the time I was clueless. Four painful years passed with blood test almost every month and my relatives trying to tell me the importance of exercise. I should mention this for the benefit of the young women and men here who have been diagnosed early. Please do not neglect exercise, it is really important. When we are in our 20’s we can tolerate the pain and delude ourselves that this is the extent of it. Unfortunately, I am an example of that being false. Please learn swimming or some stretching exercises which you can do at least 3-6 times a week.
I went to the US, did my masters, worked for a few years, got worse, could not complain to my family because I was far away. I had 5 bouts of iritis/uveitis which took away 30% of
my vision in the left eye ( I cannot read with it even with glasses) and after that I found it difficult to find work and had to return to India. A few more bouts of iritis and painful check ups I decided to try alternate therapies like acupressure and ayurveda with limited results. From the past 3-4 years I have not visited any hospital or consulted any doctor. I continue to swim 6 days a week and be vigilant. My upper back (9vertebrae) are fused and I am in constant pain.
I keep myself busy with my work and happy interactions with my nieces and nephews.
Someday I hope there will be a cure and the young AS sufferers here will benefit from it and not have to go through so much pain and loss.
Thank you for reading 🙂