Today is the International Day of the Zebra. If you have EDS or follow those who have EDS closely, you probably know we identify with the zebra. This stems from the major issue we have getting diagnosed due to our symptoms mimicking SO MANY other, more common, less serious conditions and an old adage taught in medical school:
“When you hear hoof beats, think horses–NOT zebras.”
The problem is zebras exist, they have hoof beats, and they need to be seen. They need to be diagnosed. BUT, that’s not the point of my blog today. If you are reading this blog or follow this website, you already know that. What I’m writing in this blog is more about the issue that stems from this condition and the way it presents.
Here is a short, not complete list of the symptoms of EDS (Source: ehlers-danlos.com/The Ehlers-Danlos Society):
Joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint’s normal range); early onset of osteoarthritis
Soft velvety-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).
Chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type); arterial/intestinal/uterine fragility or rupture (usually associated with the Vascular Type); scoliosis at birth and scleral fragility (associated with the Kyphoscoliosis Type); poor muscle tone (associated with the Arthrochalasia Type); mitral valve prolapse; and gum disease.
In addition to having EDS, many EDS patients have additional conditions called comorbid conditions. Here are just a few you might encounter:
Mast Cell Activation Disorder
Postural Orthostatic Tachycardic Syndrome (POTS)
So, if you’ve recently been diagnosed with EDS, you have a LOT to look forward to (I need to get a sarcasm font, because I use sarcasm A LOT and it’s hard to tell, but in this case, this is obvious sarcasm). My sister was diagnosed this past summer. We were very expectant of this diagnosis shortly after my diagnosis, but very similarly to me, about her mid-20’s, she has had an onset of symptom after symptom. Just like most EDS patients, she is now navigating a sea of doctors–some of whom know A LOT about EDS and some of whom know very little about EDS.
Like most EDS patients, she will have to see many doctors yet to determine which of the other conditions she has. She lives all the way on the East Coast, so I can’t help her find doctors or be as much of a resource as I’d like.I don’t like to think about it, actually. I wanted to be the only one of my siblings with it–not because I wanted to spotlight, but because I know how truly challenging this condition can be.
AND STILL, my own sister, who has the SAME connective tissue condition I do, looks nothing like me when you see us side-by-side medically. While we both have chronic pain, it is in different areas and in different severity for each of us. She has major issues with her hands and fingers that make it challenging for her to work with a computer; I am fortunate to still have lesser damage in this area. I use a wheelchair more of the time than I am ambulatory; she is not yet using any mobility device. We share some symptoms like chronic migraines and anxiety, but still, at the end of the day, aside from the things that lead to a diagnosis, we do NOT look exactly the same in our EDS battle.
The Ehlers-Danlos Society released a video today. You can find it <a href=”http://”>HERE.
While the video itself is great, there was one quote that stuck out to me.
“No two zebras have identical stripes.”
I have noticed a tendency among those with this condition to worry too much about where they fall in terms of their severity and whether or not they “count” when it comes to our community. Working together to understand the symptoms we share and the resources available is helpful. Determining whether or not someone else’s pain is valid based on a scale of your own symptoms benefits nobody. If you feel you are less severe than another patient, you are valid. If you feel you are more severe than another patient, THEY are still valid. Most importantly, remember that we are all more than patients; we are human beings–and that matters more than any of the rest of it.
Since my diagnosis, some of my symptoms have improved thanks to intervention. I understand what POTS is and in general, I can keep it in check well enough it does not affect my daily life as much as it is before I even knew it was a real condition. Other parts of my condition have gotten dramatically worse. My spine is more curved than ever and I now use a wheelchair much of the time due to the irreversible damage to my spine and legs. I now have to park in handicap spaces and worry about judgment from others when I don’t use my chair. If you are a child newly diagnosed whose symptoms are much less mild than mine due to your age and early intervention, don’t feel less valid–feel grateful that people are beginning to listen and understand and diagnose. Early intervention is absolutely the key to staying on top of how much EDS damages our joints.
Let’s all love each other regardless of what our stripes look like. Let’s help each other no matter what symptoms we see or know or share. Let’s understand that EDS is a condition that exists on a wide spectrum and affects people differently, but what we know without question is that coping with the reality that there is currently no cure is MUCH easier when we have others in our life who understand that same need to accept reality.
Love a zebra today. Love a zebra every day, really. We could use it.