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What’s With The Zebra Stripes?
If you are a long-term PH survivor then by now you are aware that the zebra is our rare disease mascot.
Doctors are taught, “When you hear hooves, think horse, not zebra.” Meaning looking for the more common illness and leading up to rare conditions “if” it comes to that. It’s unfortunately one of the reasons patients go misdiagnosed for an average of 2 years.
The PH Association picked up the stripes several years ago to help spread awareness.
In my column this week I wrote about how “PH and Zebras Have a Lot More in Common Than Their Rarity”.
Examples I discuss in the column are how PH and zebras can be unassuming killers. They are both good at escaping capture (aka diagnosis), and zebras can’t be tamed just like PH can’t be cured.
I think the zebra is the perfect mascot for rare diseases. Take a moment to read my column and let me know what you think. Are there any commonalities between the two that I didn’t mention?
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10 Replies
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What an interesting piece, @colleensteele! I learned so much more about zebras than I’ve known; that’s impressive!
@barbarainmemphis has always been known as the “Zebra Lady” in the PH community. Say that, and most know it is Barbara. She has advocated for us all for years. And I know she also protects her PHamily, like the zebras.
One thing that stood out to me besides the zebra facts is the quote from NORD. “Everyone has his/her own stripes, those characteristics that make each individual distinct.”
You’re such an amazing writer, Colleen!
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Since it’s PH awareness month, it would be fun to revisit this topic. If you haven’t already, maybe read this column to learn a bit more about zebra stripes and how they relate to PH.
Do you ever wear zebra stripes as a way to spread awareness? Has it ever triggered a conversation about the disease?
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Hi @Colleen, thanks for bringing this topic up again as we celebrate PH Awareness Month! Last week, I wore one of my zebra stripes tees to the lab. It sparked a conversation with a new lab tech. I explained a little about PH and how we are similar to zebras.
Like @DeLois Tweedy shared, those shirts usually do tend top stir up concesrations. I also wear my zebra striped ballcap I cvough one year from @Barbara Thompson with ,my PH awarenbess ribbon, I get compliments on it, too.
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I love the article! It really resonated with me when I first read about PH being a zebra disease. Sure wish more doctors realized this!
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The nature of Zebras is akin to my obstinance that keeps me going. This quote from your article is good. “Although it appears possible to tame individual zebra,” it says, “this species was not a good candidate for domestication.”
Not going to submit. Nine years and still a Zebra.
Cheers
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Haha, @Randolph Reynolds, too funny! So true and coming from you, I’m not surprised, my PHriend.
I hope you had a relaxing Veteran’s Day, buddy!🇺🇸
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Colleen, I had previously read your article and I thank you for the info. As Jen mentioned, I do have a tee shirt with a zebra and “it’s not always black and white”. It also says “Rare Disease Awareness.” I wear this often along with my zebra stripe lapel ribbon. It does strike up conversations about what this means.
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Hi @DeLois Tweedy, my apologies that our editing team cut your cute tee out of the image for your story.
They said it fit better in the space as they edited the size. 🙃
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Thank you Colleen. I did not see this last year, so glad you brought it up again. You are right, it took years to be diagnosed correctly for PAH. Every Pulmonologist I saw just said I had COPD and had life expectancy of 3-5 years. Search I ng on my own I found the right Pulmonologist, the right testing, the right diagnoses and began treatment for this Zebra. Also discovering, like so many others, found another Zebra blocking my way. Scleroderma which caused my PAH Zebra. No, you cannot train them, nor trust them to behave the same way.
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Hi @Carol Volckmann, those darn zebras keep up interfering, don’t they, my PHriend? 🦓But we give them a hoof up and keep on PHighting. 💜
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