Each individual affected by Ankylosing Spondylitis has their own unique story. We at SAA believe that each and every story can be a source of inspiration for anybody in a similar situation. We’d love your story as well! Send it to us at email@example.com
By Hillary Norton, MD
Spondylitis patients are known to experience a delay in diagnosis, often as long as 10 years. So why, in 2015, are these diseases still underdiagnosed and undertreated? One key factor is that the age of onset is young: The average onset age falls in the mid 20s. People in their 20s don’t typically go to the doctor for back pain. They often assume it is a result of athletic activities or physical work. If it gets bad enough to seek treatment, it will often be with a chiropractor, a physical therapist or a sports medicine doctor. And we know that these practitioners are often not thinking about spondylitis. It’s a common story. Someone has back pain that is presumed related to workouts. It gets severe enough to start interfering with sleep. A sports medicine doctor is consulted who diagnoses an SI joint sprain, and physical therapy is recommended. It may or may not help, because the symptoms tend to wax and wane early in the disease. Several months later, a shoulder injury due to weight lifting is diagnosed. The patient is sent back to physical therapy. The physical therapist notes that this is not responding the way a sports injury generally would and wonders what the real issue is. But, when you’re young, you go on and don’t give it much more thought.
This is a common story, and this is my story. I had back pain for 10 years prior to diagnosis, and only when the pain started to interfere with my life did I look into it. When there were no answers to be found I tried to ignore it, and forget that it was there. Then, as often happens, an event occurred which brought me to the attention of the appropriate specialists.
I was a first year, first month internal medicine intern on an ICU rotation with a 30 hour shift. It was July 1, 2007 and my first day – no stress there! We had a code blue called outside the building, meaning that a patient was having an emergency and potentially required resuscitation. We ran with our code equipment into the bright sunlight and when the light hit my eye, it was like an ice pick in my brain. I told the ICU fellow that something was wrong. I had photophobia. He said, “No you don't, you have a 30 hour shift to work.” By the next morning my eye looked like a hemorrhage had happened. My senior resident saw me and asked what happened, but didn’t wait for my answer as she picked up the phone to page ophthalmology. She told them, “We have an emergency with an intern.” She knew that uveitis is one of the leading causes of blindness if untreated. The astute ophthalmologist took me to his clinic for an exam and asked if I had back pain. I said sure, but I’ve had that for 10 years or so. He said you need a rheumatology evaluation. I barely knew what rheumatology was – we don’t get much exposure to it in medical school. Perplexed, I wondered how my back pain could possibly be related to my eye pain. After visiting the rheumatologist, a lot of pieces came together as I got the diagnosis of ankylosing spondylitis. We don’t talk much in medical school about the systemic symptoms in AS, but the flares with low grade fevers, joint pain, and severe fatigue are fairly common.
Soon after diagnosis, treatment options were discussed. Like many of my patients now, I was afraid of biologics. I waited long enough that I have a good understanding of the natural progression of this disease. Eventually I was limping around the hospital as a rheumatology fellow. Many days I couldn’t do the stairs; I would take the elevator and then try to catch up with my team on the wards. My nights became shorter and shorter as I could no longer lie down for more than a few hours. My husband would help me out of bed in the middle of the night, which was a process that took some time. I would then pace slowly or sit upright in a chair for the rest of the night. Rock bottom came when I was traveling and in a hotel room without my husband. Two hours was the extent of my sleep that night and then I had to get up. The problem was I just couldn’t do it. I was stuck in bed in a hotel room and unable to get up, yet lying down meant pain too severe to handle. I realized then that it was time to try a TNF inhibitor. I did my first injection and boy was I ready. I thought bring it on! The very next day I awoke in the morning – the morning! Not the middle of the night! I thought my husband was asleep and I got up and took a few steps. I turned to look at him and his jaw was hanging open. He said, “You just got up!” I said, “I know, I just got up!” It was like turning the clock back. I will never forget that morning. Every time I sit up and swing my legs out of bed I am still grateful that I can do that.
This journey with spondylitis has helped me understand what my patients are experiencing - this is something you cannot learn from a textbook. We have treatments for this disease that work for many, and promising new ones in the pipeline that I hope will prove effective for countless others. Spondylitis is getting more exposure in recent years and I am hopeful that we will continue to make strides in earlier diagnosis and better treatments to help change lives.
Other posts by Hillary Norton, MD
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