Physicians can mistake symptoms of rare diseases for those of common, innocuous ailments.
Medical training instructs physicians to look for the horse and not the zebra when attempting to diagnose a patient presenting with a cluster of common or uncommon symptoms. This training serves physicians well; even the most mundane ailments may include bizarre symptoms. However, while unlikely, one might find a zebra running among the sleek quarter horses at a renowned Kentucky horse farm. And – however unlikely – an astute physician may spot a pattern or non-pattern of symptoms in a patient that simply do not – cannot – be explained away as manifestations of the usual suspects. Enter the zebra of the medical world.
When You Know It’s Not in Your Head
While many in the medical community may scorn the popular medical series, House, which features a Vicodin-addicted, emotionally immature medical genius, the general public has a huge crush on this racist, arrogant, smart-mouthed freak. Why? House is driven to find answers; whether those answers involve commonly seen ailments, such as leukemia or herpes simplex II, or an obscure, but deadly, amoeba such as a highly pathogenic strain of Naegleria fowleri, House will find the answer missed by everyone else.
No one would actually tolerate a Vicodin-popping, HIPPA-violating, sexually inappropriate physician like House in real life. But people long for the tenacious and unstoppable curiosity portrayed by this man in their real-life healthcare situations. People need medical heroes that relentlessly seek answers for their patients.
Never Give Up – Find Your Zebra
Take a look at the following link: The Road to Diagnosis: Stories from Patients with Rare Diseases. If you struggle with an undiagnosed set of symptoms that adversely affect your quality of life, these stories will uplift and Inspire you to carry on until you get an answer.
Inspire is a New Jersey-based company that builds and manages online patient support companies, in partnership with national patient advocacy and health associations. Follow this innovative and supportive organization on Twitter @teaminspire.
#1 by wrekehavoc on March 5, 2011 - 1:40 PM
as a person who occasionally blogs about my experience with common variable immunodeficiency (which is definitely a zebra condition!), i thank you for bringing attention to those of us whose situations aren’t so obvious.
#2 by Samantha Gluck on March 5, 2011 - 6:16 PM
It seems that many physicians gravitate toward the “it’s all in your head” solution when a problem baffles them, especially with women. I realize that there are attention seekers who fabricate symptoms, either purposely or subconsciously, but these truly are the exception. Keep fighting the good fight and thank you so much for visiting. I welcome requests for articles about specific Zebra diseases as well.
#3 by Michelle on March 5, 2011 - 2:34 PM
Thank you for your inspiration! I have gastroparesis! Very challenging -
it’s an unhill climb…The hardest part is getting someone to believe you!
Believe your sick!!
Victory awaits!
#4 by Samantha Gluck on March 5, 2011 - 6:13 PM
I’m so glad this piece was helpful. Coming from a family of physicians and having a medical background myself, I see both the good and the bad and, sadly, the apathetic in medical professionals. The best ones truly listen and search in a relentless (almost obsessive) way for the answer. The group that produced the paper about rare diseases is a wonderful group. Check them out on Twitter (link in article).