Zebras: Too Cute for Our Own Good?

In a discussion regarding EDS awareness ideas with someone on the Chicagoland EDS Group's facebook page, I began to wonder whether we have trended too far toward the cute and humorous in how we present EDS; not just among ourselves, but to the medical community and the general public as well. We see many wonderful zebra-themed slogans, logos, and awareness ideas, and zebras have an important symbolic message. But let's face it: in general terms, a zebra is an inherently cute, positive, healthy image, and the message it sends about EDS is limited: it's not a symbol the public understands in any particular context and it doesn't speak directly to any issues beyond how we want to be perceived by doctors. I think many of us with EDS feel more like ROADKILL ZEBRAS (for want of a better image) most days and we don't always have an easy way to express that and don't see that feeling validated often enough. So let me ask this: are we too positive (particularly with symbols, logos, and slogans), and do you think that it takes away from the seriousness of our message and the overall perception of EDS? Do we need a better balance with messages and symbols that are more reflective of the serious nature of EDS - that it is life-altering, painful, crippling, and even deadly? Does that feel too negative and overwhelming, or should we find more awareness ideas to reflect our frustration, grief, rage, and worry? If so, what would you like to express and how would you want it see it done?

Thanks for your thoughts!

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This is an extremely interesting question to me - I work in marketing/communications, and visual branding and identity is one of my specialties. I've worked on a couple public health campaigns in the past. I don't have any easy answers, though ;)

So, here are some thoughts:

If someone approached me to create a visual identity for a disease-awareness campaign, the first thing I would do is study some examples of diseases that have successfully branded themselves in the past...the red ribbon for HIV, the pink ribbon for breast cancer, the red dress for women's heart disease, and the autism puzzle piece immediately come to mind. It would also be prudent to study failed branding campaigns, to learn what NOT to do, though that naturally would take a bit more digging.

Just going with my gut, I don't see zebras as being inherently too cute as a symbol for EDS. A lot of it is going to depend on the graphic treatment...for example, these abstract zebra illustrations are kinda serious and and moody: http://skatalyst.deviantart.com/art/zebra-skin-198208, http://www.etsy.com/listing/84723152/watercolor-illustration-print-zebra, http://www.shutterstock.com/pic-1243327/stock-photo-zebra-illustration.html . And, it's nice to have the option to "go cute" when designing materials aimed at pediatric EDSers: http://alexlatimer.wordpress.com/2007/10/20/zebra/ (Awwww...)

I also don't believe that the symbol needs to convey the full awfulness of EDS. After all, the symbol also needs to be applicable when we're talking about positive things too, like progress in the diagnosis/treatment/awareness of EDS (I hope, haha). So, I'd like something that is serious without being negative.

My biggest concern about the zebra is how medical professionals (and their egos) respond to it, since it could be perceived as a critique of the medical establishment. That would take some research, though.

Anyway, I'm very interested to see what other people thing about this!

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I was thinking about this on the way back from running errands. I don't think there is anything wrong with the zebra. I think the issue is that nobody associates the zebra with EDS except us. Heck, even we have to explain it to others. ED'S is so far under the radar it's not even funny. That's the real problem. Not some mascot. I mean there's. It even an official awareness ribbon. EDNF asked for volunteers and there were plenty of people who stepped up. I don't know of anyone who has been contacted.

Some friends and I have an awesome ad campaign idea. I am afraid to let it loose though because it needs to be done right. We plan to organize it ourself and are working on it.

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lol! Roadkill zebras! Sorry, I could not help but laugh a little.

But, more seriously, I think there is a time to be positive and a time to be serious and not to minimize the problems of the condition. With doctors and people who do not know much about how the disorder affects peoples lives, it is important that the issues be brought up honestly and not be downplayed. But, with other zebras, who are also suffering and understand how serious it is, some humor and positivity is necessary for the maintenance of sanity.

I would hope that in general people do not take lightly a serious condition based on the mascot alone. As long as people are upfront and do not downplay EDS when describing it to others, I think having a slightly upbeat mascot is fine. (I could be wrong, though, maybe the general public is not smart enough to make this distinction?)

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Interesting question, riems.

I agree with theholla that an identifiable icon/logo like the red ribbons, puzzle pieces, and...yes...zebras helps with awareness.

I believe there is a time and place for both cuteness and realistic portrayals. Half of awareness is directed toward the general public. For the most part, cuteness is the manner that this awareness is spread. Let's take "Breast Cancer Awareness" as an effective example of a great campaign for awareness. The cute aspects of the campaign include such things as pink ribbons, "Bras for Breast Cancer" days where women donate their bras, "Think Pink" apparel, and (my favorite) "Save the Ta-Ta's" T-shirts and car magnets. None of those things speak to the tragedy, pain, and sorrow...the dreams lost, the families shattered. But what they do is heighten awareness in the general population making the cause have a higher profile and garnering attention and research dollars.

The other half of an awareness campaign is education. This is where posters in doctors' offices and hospitals about "if you can X, Y, Z...then you might have EDS" are good. Petitioning medical schools with information packets, speakers, and "real live EDS patients" can be a tool. Striving to provide continuing education credits to practioners in conferences about EDS and related conditions is another strategy. Approaching school systems to provide presentations and in-service seminars to teachers and administrators about children with EDS could be another prong. Convincing local doctors to attend local support group meetings to hear "from the zebra's mouth" is an idea. Additional journal articles and books being published about EDS would add gravitas. Approaching Social Security and other "aid" organizations and institutions with educational seminars is another idea. And so on.

If the awareness campaign is solely "real", we will lose the opportunity of having "normals" help spread the word. Natural human inclination is to shy away from the scary...so reel them in with the cute. An awareness campaign that is solely "cute" will succeed in providing a false image of the challenges faced by so many EDSers....so validate and help them by providing the "real".

Anyway, for what it's worth, those are my two cents...

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I'm new to the EDS world, and frankly, I don't get the zebra symbol. Are we saying we're just like everyone else, presumably "horses," but we just have unique stripes? I don't think it describes someone who has something wrong with them, regardless of how severe or how slight. If it were a zebra with buckling joints, maybe I'd get it. Rather than a ribbon campaign, we need a crusty, over-stretched rubber band campaign. Then people would get it.

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Hi Zizzy and welcome!

Two points:

1) The zebra symbol actually comes from an anecdote taught to med students early in their education that goes something like this, "If you hear hoof beats, it is important that you assume that it is horses. If you assume it is zebras, you are ignoring the most likely cause or diagnosis...i.e. horses" So doctors are actively taught to try and fit patients into "likely" (horse) categories and that it really is not likely to be a "rare" (zebra) condition.

2) The difficulty with having any bendable, dislocating, falling apart, stretchy skin symbol is that it continues to reinforce in the minds of the public and the medical community that EDSers ONLY dislocate or have extremely stretchy skin. This is simply not true and it is the ones that don't match the extreme definitions that fight to recieve diagnosis and adequate care from educated practitioners.

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I think zebra as a tool to keep doctors minds open is a good idea. As a logo or slogan for eds I think it's not as useful. Considering there are tons of illnesses and diseases that can fall under the idea of 'zebra' I don't think it would be productive to try and co-op the idea to just eds.

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I think it is what it is - and leave it be. You happened to write this topic discussion in the Year of the Animal Prints in fashion design - so there are in likely every store type the USA has - Zebra print items... Home Depot even - with neck lanyards and duct tape. My coolest item owned - is a 'flask'.... Gotta love it - unused, unopened - gloriously zebra - awaiting a 'bit 'o' rum'.....

You cannot 'un-zebra' EDS ... history and present times are just that... done deal. If you wanted to wage a campaign admonishing the connotation or connection for the future ~ by ? somehow making it forbidden ~ or removing it from this organizations use of it ~ that is fully an option... But what precisely are you trying to convey or portray to the public in doing so? "They used to be zebras - who knows now".... Could be worse than just explaining why a zebra connection to begin with. There are "plenty" of disorders that are zebras by the story of med-school sentiments... EDS peeps latched onto it.

As EDS'ers we know the 'lifestyle' we adapt to, we know the sacrifice and the pains ~ We know too that we are much more than our pain... We are beautiful human beings struggling with a difficult malady ~ people the world over struggle with ailments as bad as ours and a whole lot worse. We are "all" human and we "all" experience suffering to some degree in life from one causation or another. We grow in love and compassion sometimes in the measure we face ourselves in distressed situations - and EDS has a lot of that - distressed situations.

As some mentioned previously - if you ask someone to 'think fast' - and name illness or disorders & their 'catchy campaign' symbols that help in fund raising and awareness... there really aren't that many hugely known for a nation as big and ultra-civilized as we are. The whole breast cancer and color pink.... the color red for the Aids population.... yellow for the anti-cancer Armstrong group.... A picture of St. Jude... Easter Seals... There are more but these are some biggies.....

I don't see anything wrong with having it as a symbol because it already is our symbol and while some are aware of it's meaning in connection with EDS - many EDS'ers don't even know why it's used.... If you want people to know why you could explain it to the conference attendees - we can't assume everyone knows why it's used. But a symbol doesn't 'soften' the image of a painful medical condition ~ I don't think breast ca is harmless cuz it's color is beautiful 'pink'..... And surely arthritis - a huge huge problem doesn't need to have a gnarly joint photo to convince me it hurts in their campaigns. I don't have to know the Komen story to have a pink ribbon teach me that the fundraiser is for breast cancer - I just know by it's color... An EDS'er doesn't have to know why the zebra - but it wouldn't hurt to know - as I'm sure some breast CA people have googled Komen if they desired to know the story behind the foundation.

So like it or not we have the 'zebra' connection. To us in the "culture" of EDS for awhile - meaning those who've found their DX and have read books, met others at a conference, learned through the books and hard knocks about what we are dealing with in a less than warm medical community or conversely learned through our main group of compassionate USA Geneticists.... the Zebra is a voice or a small validation perhaps of 'what we have might be 'odd' but it is very real'. None of the other major symbols to my way of thinking address this heinous situation where what we have is frankly disabling or as you mentioned a killer disorder (John Ritter comes to mind - didn't he have a killer aneurysm likely attached to an EDS variety) but is largely 'unrecognized'..... which can equate not respected in the medical and insurance business communities.

So not to be swept under the the carpet our symbol --- addresses that very need to be noticed. A 'glaring' pattern of black and white stripes.... If it would be helpful we 'memorize' our spiel so as to say it correctly you could post that on the website 'home' page. Every health care professional would then READ at the get go the reasoning behind the disorder's symbol - the Zebra - and in that a stand-out descriptor of the worst EDS case life stories - disability, pain, surgical intervention, frequent dislocation, death. The symbol then in it's infancy would be right away understood - the image is of it's toll on the human lifespan - and how research need is DIRE.

While some find zebra's cute - it was the fashion industry that initiated the move to a popular cutenss.... Humanity has always been intrigued with this bizarre patterned animal ~ and other wild animals.... Unless of course you live in Africa or Big Sur where zebra's roam as a normal everyday thing & you are well used to it... Used to it though does not negate it's beauty... They are striking and beautiful just as EDS'ers are...

If you imagine collagen in it's proper matrix - you can envision the shiny skin of a beautiful thoroughbred horse -- if you envision the collagen matrix of an EDS'er - the wide meshy spaces between the black and white stripes - paints a picture of how 'weak' our structure is in comparison... solid black vs. lots of black with gaping white spaces... I'm not 'held together' with the same unity and strength and uniformity of tissue... The zebra pattern also proves as an illustration of sorts of our bodies weakness...

So if it's as simple as EDS'ers grasping the 'rare disorder' title and the rare patterned animal together ~ first ... I say good for us... and I'd push it all the more as simply our 'pink' or whatever - to help awareness to raise money for research to seek remedies... If you are of the mind to disassociate with the Zebra - I'd want to keep the zebra 'pattern' the black and white stripes for sure...

The disorders simply "are".... Rare or the number one killer of women in the USA ... Whatever the statistics show, no matter how many die, no matter how many suffer --- thus far 'awareness' is mainly about seeking money. Cancer will continue to kill until there is a cure... People will die with AIDS until there is a cure.... Children will suffer and some die ~ unless the money raised for research is raised to find that cure - be it diabetes, arthritis, cancer whatever. I'll take a black and white (zebra) ribbon - in some ways a complete opposite of what our disorder is (black and white) - in hopes that one day it will be so well studied and research it 'becomes' black and white with huge strides made in treatment and prevention of symptoms... imho

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Shawn83 said is succintly, perfectly. We need a new symbol. Maybe a rubber band/colored elastic? Or maybe one of those stretchy bracelets that the kids wear like "Silly Bandz" except instead of an animal--it would spell EDS. (http://snipurl.com/21sy1py) Just about every EDSer has something stretchy--stretchy skin, stretchy connective tissue, stretched out esophagus's, mega colons, stretched out arteries (aneurysms, etc.). Just an idea.


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In answer to your last question... I would say my number one issue is that in the everyday life of a doctor whose bread and butter is on huge money making procedures day in and day out - making billions of dollars -- there is no administrated demanded 'force' for them to learn anything they do not want to learn about.

So if I'm an orthopedic surgeon doing sports medicine for adolescents - I do not have to learn about joint hypermobility, the Beighton or revised Brighton criteria at all. I will however charge out the yazooo this family for diagnostics, therapies, surgeries, braces etc... If you are under 50 and have severe arthritis - I can replace all your joints - but have no obligation to check for hypermobility and diagnose a connective tissue disorder.

If I'm a rheumatologist treating painful musculoskeletal disorders I can order expensive labs, diagnostics, prescribe medications - but if you are negative on film, negative on labs - I have no obligation to seek an answer for your pains by even checking for joint hypermobility ~ I can however treat you rudely like you are with a mental illness or are looking for a pass from work, are a drug seeker etc..

If I'm a gyn doctor and you prolapse and your surgical wound dehiscence is troubling - I can do more and more surgery but never check for joint hypermobility or a cause for you old surgical scars to be paper thin and a mile wide.

If I'm a cardiologist and you have labile blood pressure and / or symptoms of dysautonomia ~ troubling to the patient and doctor - I can try you on a myriad of medications ~ but never decide to look at a bigger picture - like I wonder if this frustrating symptom set is part of something bigger?

If I'm a coroner doing autopsy on a sudden death from aneurysm - do I even care then about why or how this happened and might I somehow be able to seek out the family to alert of a possible genetic condition looming over the entire families head with no knowledge of it?

You can see my frustration lies in that this will continue to be a HUGE problem in the medical community - Absolutely huge -- because there is no one to challenge the Status Quo --- which is doctors you go ahead and make your money and treat people badly that you don't understand..........

If it's true that this is NOT as rare as it was intially thought to be - Mandated Education with Mandated proof of knowledge must be implemented. We are too easily taken advantage of otherwise. We are medical money making machines - because our disorder is effecting virtually every body system. From the Gut to the soles of our feet to our necks and brains - we are a medical anomoly that will get swept under the carpet ~ while making us live in the poor house.

It is abominable to my way of thinking that we suffer this way. We need litigation perhaps... I mean our disease processes literally generate trillions of dollars overall from pharmaceuticals to therapies to surgeries.... Yet there is no one - absolutely no one that can intelligently share about this disorder in and frank and humble way on any regular basis.... and if you do find one who knows there is absolutely NO support for them -- and no push for them to find support ... no 'place' to turf the patients to for help. No one has heard of Dr. Tinkle and his books but a rare, rare doc who is humble ~ and lucky enough to have a patient who teaches and self advocates.

I think the single best answer to this if litigation doesn't demand basic knowledge of the disorder would be to implement my plan and dream for a one-stop-shop EDS clinic very much akin to those in the UK. With 'clinics' addressing each body system, day programs and hospital as well. Running on a modified Mayo Clinic approach - all the disciplines would converge in one location at the first USA entirely EDS Clinic... each wing dealing with it's issue - a multi-building campus... Lots of publicity lots of forward thinking doctors and clinicians in one place devoting their lives to increased quality of life for the EDS patient's and family.

I mean as patients grow aware they have this --- I assume the teaching falls on us.... while in pain to utter again humbly what we are experiencing and what the experts say about it... but STILL we ARE the patient and to have a healthy working relationship we have to remain that... and doc allowed to be a doc. But if there is no place to refer patients to - that validates and cares for 'us' be it dysautonomia, reflux, migraines, chiari ... the doctors education is a bonus - but doesn't trickle down to competent patient care if the geneticists are far away in another location freestanding not associated with an EDS clinic...

Okay enough - just my 2 cents... thanks for listening

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Check out the answer to number one. Apparently, zebras-real ones-have genetic issues too...

Zebras are already associated with EDS, at least somewhat. If breast cancer awareness suddenly decided to use...I dunno, a pic of someone crying? A yellow ribbon (goodness knows why they'd choose yellow, I'm just tossing this out here)? Maybe black, for sadness and loss and death, etc? Breast cancer awareness would pretty much go poof. People aren't going to buy the grey t-shirt with black ribbons all over it. Nobody knows what it is. Same for the black slippers, the black magnetic car bumper ribbon thing...etc.

And I love this one.
Zebras are pursued by several predators. I would consider my EDS a predator-each facet of it, really. A zebra goes through life figuring it will either die of old age, or one of those predators will finally get it. Each of my internal organs that has issues, my joints, my veins...those are my predators.
If one zebra is separated from the herd, the others will search for it. They're enormously protective of new foals, and will slow up so older zebras can keep up. I would consider that to be close enough to this amazing community. Every time someone posts "I just got diagnosed" or "I think I/my child/my spouse/my family member/someone I know has EDS", they get so much support and help. I felt protected when I first posted on here-not physically, but emotionally, I guess. Everyone was kind, and when someone is just finding out they've got a lifelong, painful illness, I think that kindness counts as protection...you could probably consider it protection from the people in real life who don't get it, who insist we're faking it, we're exaggerating, etc...protection from the doctors who don't know what they're talking about. But you're still there for the people who've been here for ages, the older zebras, you're understanding of people who can't type very often or very long, regardless of how long they've been diagnosed. And I like to think if I suddenly disappeared, people would wonder if I was okay. Probably not search for me, but still. It's that emotional support. Whether or not it's true, even, it's still reassuring to think that.
Foals won't move as fast, but are capable of running only an hour after birth. Very quickly after a doctor mentioned EDS to me, I was off and running. What is this illness like? What does it mean for me? I think most people are. You get diagnosed and you start researching and finding support within a very short time.
Zebras are also endangered. We are in danger of people forgetting about us, ignoring us, deciding we don't exist. Most of our efforts are an attempt to reverse that. And zebras face competition from livestock, healthy animals. Our competition is with horses, for us to get jobs we can do, to convince doctors that we aren't all horses, to convince the horses that we aren't unicorns.

So yeah, I like zebras.
And am in a very slow process of knitting a purse, then tying yarn on to form the letters "EDS". Did anyone else know that Walmart actually carries a color of yarn that's black and white, and actually called Zebra? Literally, that's the color.

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riem I agree 100%, I just don’t get the zebra deal. When I first found this site, I felt the zebra was almost an insult to what I go through on a daily basis. I think we are better off making it road kill and drop it and have nothing rather than this confusing mascot.

I think Pandoras box is more fitting: From Wikipedia

Pandora's box is an artifact in Greek mythology, taken from the myth of Pandora's creation in Hesiod's Works and Days.[1] The "box" was actually a large jar (πίθος pithos)[2] given to Pandora (Πανδώρα) ("all-gifted", "all-giving"),[3] which contained all the evils of the world. When Pandora opened the jar, all its contents except for one item were released into the world. The one remaining item was Hope.[4] Today, to open Pandora's box means to create evil that cannot be undone.

We have all the evils some yet to be known and truly only left with hope.


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I happen to hate the "zebra" nonsense. David Sedaris wrote a similar bit about rainbows flags and gay people......he didn't get a vote.

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Hi everyone. I have to admit, I was never a fan of zebra-print. Thought it was a little tacky and trampy. However, the EDS community has very much grabbed hold of this, and I think its better to work with something that already has some traction. I previously shared some of my designs in a different post, but feel it would be good to add here to get some feedback (both positive and negative - bring it on - I realize that there would never be one single image or logo that everyone in the EDS community would agree on - we all have our own perceptions and interpretations of the illness and how it should be portrayed.

http://www.facebook.com/media/set/?set=a.189755261123225.38754.100002662583 008&type=1&l=b790b7923b

What i like about the zebra connection is that it is very bold and graphic.
I think it is great to not be tied into a particular colour. (Most have associations with other groups anyways). Multiple colors often looks jeuvenile, which is why I'm not personally fond of the multiple colored pieces of the Autism puzzle logo. We really need something that just gets us noticed first of all - then we work on the educational aspects. And zebra print is eye-catching. But it is so much about maximizing the exposure of the image/logo - having it on large, visually dramatic items (shirts & bags, not just pens or bookmarks - but stuff that will really get seen). And I think all items should have a website for anyone who has interest to look into it more.
Ps. As much as I like the graphic black and white - I'm really glad its not a cow-print that EDSers had embraced!

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I think the zebra is great, because of its origins. It took so long to get diagnosed and doctors either gave up on me or the good one who didn't and some he sent me to were still dumbfounded. The zebra brings awareness to the one group whom God has given the talents and knowledge and authority to to help us out the most, doctors. They will get it and know what it means and if you find a caring compassionate one, they will hopefully then understand that our complications are even sometimes zebras, not just the EDS itself. I mean, some zebra diseases at least present with horse complications, but I have a cardiologist yesterday who was in charge of my tilt table test tell me that he doesn't know what POTS is when I asked if his diagnosis of orthostatic hypotension fit into my Postural Orthostatic Tachycardia Syndrome diagnosis. So, I think the zebra gets them thinking if they are humble and caring enough to accept it and you need good thinking doctors on your team. I hate to say this, but it seems that some who are complaining about the zebra are allowing their EDS to make them become bitter. That is not a good place to be in my dear friends. It will only hurt yourself and cause you even more pain than your EDS does, whether you realize it or not.

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If there were a new sentiment that did over-ride the want of keeping the zebra color/symbol graphic ~ what would the nay-sayers choose? Sure like mono or measles or whatever - there could be 'no symbols' --- meaning literally abandoning any association with any visual graphic with EDS at all..... But if you simply were made to choose something different - I would truly love to read what people suggest... anyone?

I also would love to know how the people in the USA pronounce EDS... I've heard "Ed's" like the guy's first name.... I've heard each initial E-D-S... I've heard Heads -- for hypermobile eds...(HEDS)

Then I've heard: AAAAY-lers Dan Lows and I've heard: L'ers Danlows......... I've heard the 's' be silent if that makes sense Ehler-Danlos

If I had to choose a color 'ribbon' for EDS I think I'd choose gray if zebra's weren't allowed.... Just because it's applicable to uncertainty as in gray area - makes your brain crazy as in grey matter, it reflects your mood often enough and it's a blend of black and white - the zebra transformed I guess...to something else...

All and all though - I may not have chosen it - but I can't think of anything better - and now and again I love teaching people about the zebra in connection with a rare disorder - I've done it several times when at stores commenting on how this or that would reflect something about me that some might not know...as it's crafted in a zebra print.

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I happen to like zebras and am fairly attached to them for representing us. If we wanted to go for reality though, we could use a hangman game. Since you never know what will be taken out next. You just know it will and soon and that the results are going to be over the top. The zebra may be cutesy but I am not there at all.


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As a vascular EDSer I don't feel the same connection to the other types or zebra since there is an actual test for vascular and it's manifestations aren't as diverse generally.
The stretchy idea is probably good for general public marketing as it applies to all types in some way I think. Black white strips could work too but adding the zebra I think is only good for medical marketing.

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I find that the zebra is sort of an inside joke that only other EDSers and a few astute doctors will get. I don't think it matters what symbol you attach to a disease. It's the message that matters. You wouldn't approach someone about EDS and say hey I'm a zebra want to get involved in my cause? You'd more than likely say hey I have this rare genetic disorder that I'm trying to raise awareness about....The zebra just makes me smile. Everytime I come to this sight, it's the first thing I see and I smile. There's a billboard downtown for the wildlife zoo and it has a giant zebra showing it's teeth (as if speaking) and it makes me smile because I feel like I'm part of this inside joke. No one else may get it but for me, it's a happy reminder that I'm not alone.

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Just curious...after I posted I was still pondering this question and I wondered why the zebra isn't featured on the EDNF.org website. Is this symbol unique to this message board? Maybe it's not as much a symbol as we thought?

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