We follow quite a few patient advocacy groups on Twitter, one of which is Hibbs Lupus Trust. This morning I saw several retweets of their patient-followers discussing how long it took for them to get an accurate diagnosis of lupus. For some, it was relatively quick - a few months. I say relatively because for some it was over a decade. How can this be, in our super-duper modern medical system? The most advanced technologies to date are at our physician's fingertips, yet it took 15 years to get diagnosed?
Diagnosing a chronic illness can be tricky, especially if the illness is insidious or rare. According to the American College of Rheumatology, there are around 330 possible clinical presentations of systemic lupus erythematosus. Depending on what part of the country you live, your access to high tech medicine may be limited. Or, depending on how rare your condition is, there may not be any specialists in a 500 mile radius who've heard of, let alone know how to treat, the disease. I know of many families who travel many miles to go to Cincinnati Children's Hospital for their Eosinophilic GI Disease program. When I saw clients at Northwestern, the same was true for their adult EGID program. Imagine getting on a plane instead of getting in your car to see your doctor.
So, what does the research say about the average amount of time to accurately diagnose various chronic conditions?
Diagnosing a chronic illness can be tricky, especially if the illness is insidious or rare. According to the American College of Rheumatology, there are around 330 possible clinical presentations of systemic lupus erythematosus. Depending on what part of the country you live, your access to high tech medicine may be limited. Or, depending on how rare your condition is, there may not be any specialists in a 500 mile radius who've heard of, let alone know how to treat, the disease. I know of many families who travel many miles to go to Cincinnati Children's Hospital for their Eosinophilic GI Disease program. When I saw clients at Northwestern, the same was true for their adult EGID program. Imagine getting on a plane instead of getting in your car to see your doctor.
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| I just need to go to my appointment. Thanks. |
I know of a lot of people, myself included, who were either misdiagnosed or took a while to find out what the heck was going on. Personally, I received my Crohn's diagnosis rather quickly - within 3 months of my going to the gastroenterologist. But when I didn't get better with Pentasa and Entocort as expected, the whole thing was thrown into question because my tests indicated a "mild" case. I then spent the next year and a half or so undergoing tests that were so randomly positive, negative, or inconclusive it was enough to drive you to drink. For example, I have chronically low vitamin B12 because I have Crohn's in my terminal ileum, where B12 is absorbed, but the test that measures if I absorb B12 appropriately came back normal. My IBD serology test came back positive for Ulcerative Colitis, not Crohn's, yet my colon was clean as a whistle.
So, what does the research say about the average amount of time to accurately diagnose various chronic conditions?
- More than 40% of patients with Rheumatoid Arthritis take more than 6 months for diagnosis.
- It takes twice as long to diagnose autoimmune hepatitis in people over age 65 compared to younger adults (4 months vs. 8 months).
- In several European studies (Germany, France, Italy, Austria), the average time to diagnose Crohn's disease in children ranges from 4 to 10 months. In the United States, the average ranges from 3 to 5 years for both children and adults.
- In rural communities in the United States, it takes around 3 years to diagnose lupus, with the high end of the range approximately 11 years.
- The median time to diagnose eosinophilic esophagitis in children is around 3 years. This tends to be longer in adults because the condition is often misdiagnosed as GERD (gastroesophageal reflux disease).
This is just a snapshot of some of the research data on time to diagnose chronic conditions. I've only included a handful of studies and I'm sure there are bigger ranges than I've been able to capture in this post. A lot of the time, the average patient gets lost in the research data and their personal experience may fall well outside of lines of text in a journal publication or a value in a statistical analysis. Medical professionals need to remember that.
What has your experience been in getting an accurate diagnosis of your chronic illness? We'd love to hear from you!
Best,
Dr. T.