Dear LA Times: Dodgers' Franklin Gutierrez's Condition Isn't Rare
Earlier this week the LA Times published an article about Dodgers’ starter Franklin Gutierrez being placed on the 10-day disabled list due to his rare condition, ankylosing spondylitis (AS).
I happen to be an ankylosing spondylitis patient myself, and I can vouchsafe that AS is most certainly not a rare disease.
Ankylosing spondylitis belongs to a category of diseases called spondyloarthritis or spondylitis. At least 2.7 million Americans have a form of spondylitis — that’s more than ALS/Lou Gehrig’s Disease, cystic fibrosis, and multiple sclerosis combined. According to the National Institutes for Health, rare diseases “are diseases that affect fewer than 200,000 people in the United States.”
We are definitely not rare.
As unobtrusively as the world revolves around fast news (or vice versa), it may seem finicky to point out this one instance of misinformation, but my disease is misrepresented as “rare” quite often (even in articles about me after I’ve pointedly informed the reporter). Weekly, I come across errors printed not only in the news, but also on medical information websites that are meant to help patients learn about the disease.
These seemingly minor misconceptions about AS are misleading, especially for those with symptoms of the disease. Shouldn’t these sites employ better tactics to dispel misinformed “facts”?
Here is some context:
As a woman, I grew up believing AS was only a man’s disease. It took 13-plus years for me to even seek care for my symptoms because I never once considered that I could inherit AS from my father. I spent over a decade explaining away aches and pains on imaginary causes, only to discover after I was diagnosed that those symptoms were all red flags for the disease. Studies now show that AS is much more prevalent in women than previously believed, though there are still specialists who refuse to diagnose women with the disease.
I grew up within a context where my symptoms would not have been granted an audience by a majority of doctors who specialize in AS, much less people with the disease. I feel I would be doing an injustice by not calling out an error in reporting that supports the myth that fewer people have a disease than actually do.
Ankylosing spondylitis not being rare does not make the disease any less severe, however. It’s horrendous. My breath is sucked from me each and every time I realize how much it impacts every breath I take.
Ankylosing spondylitis is a severe inflammatory disease that primarily attacks the spine and sacroiliac (SI) joints (this is called axial involvement), but can also affect the joints of extremities, like shoulders, wrists, fingers, knees, feet, and toes (this is called peripheral involvement). AS is also a systemic (whole-body) disease, which means it can affect other parts of the body like the eyes, skin, lungs, heart, and gastrointestinal system. In severe cases, the disease can cause bone spurs to form and fuse the spine together in a fixed column of fragile bone, making a person permanently hunchbacked in the process. In less advanced cases, AS can cause significant discomfort, limit range of motion, and progressively stiffen various joints in the body.
All of this chaos in the body causes pain, and because the body is fighting against constant inflammation it can also cause considerable fatigue. Treatments vary, but for many with AS, an effective medical treatment can be a biologic drug — a specialty medication that halts or slows the body’s natural immune response to its own inflammation (biologics attack the immune system, so patients are more susceptible to infections). AS symptoms are often also managed with a mixture of non-steroidal anti-inflammatories (NSAIDs), steroids, pain medication, disease modifying anti-rheumatic drugs (DMARDs), diet and exercise.
I do not know the specifics of Dodgers’ outfielder Gutierrez’s treatment and disease management other than what was listed in the LA Times article. I do know, however, that his journey is not an unusual one for people with AS.
People with AS often find that rest can cause painful stiffness while movement and activity can relieve this stiffness to a certain extent. This was why I myself loved sports so much: playing a 90-minute soccer game was the only time I did not feel pain throughout college. But it ended up that my disease was moving faster than my body when I was diagnosed in 2013, and my health now continues to decline.
I suspect Gutierrez will return after 10 days off and continue the season, but he will not have been cured in that time from a short-term sickness like the flu. There is no cure for AS; and the prognosis, severity, and treatment are different for every single person who has the disease.
While ankylosing spondylitis is statistically not rare, as I shared above, we who have it often feel it is rare because we do not (yet) get a lot of attention. Even our own doctors do not always know how to properly treat it, much less diagnose it.
For this reason, it is even more important that articles like this undergo a medical review by a trained specialist. Misinformation about diseases that affect a considerable proportion of the population is harmful not only to those who have the disease but also to those displaying symptoms who could dismiss it as “too rare for me to get.”
For more information about ankylosing spondylitis and related diseases, watch this short video and visit www.spondylitis.org.
Editor’s note: Consult a doctor or medical professional for any questions you have concerning your health, and before starting or stopping any medication.
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