My Weird Body: In Two Parts

Note: This article was composed to honour Ehlers-Danlos Syndrome awareness month in May.




PART I: COLOR

As a kid, there was always a facet of me that was pure speculation for others.

What are those red marks on your arms? How did you get them? Are you okay? Can I write on you? Can I sign my name?

As a teenager, the speculation is still present, but no longer pure. It has turned into a tainted concern.

Whoa, are you okay? Look at your neck. Do you need to check a mirror? Are you allergic to something? Hey . . . you have those red marks on you. What is wrong with you?



Well, there is a lot wrong with me, but my skin is not one for the list. It does not look like it though. It looks like there is something gravely wrong, as though I need medical help. Allow me to defend myself.

I have dermatographia. You have probably never heard of it. It is an extremely rare skin condition, and I am repeatedly told by my doctors that only about 5-10% of the world has it. Plainly, the word means “skin writing.” It is a direct translation from New Latin. “Dermato-” means “skin”, and “graphy” roughly means to create or record something. Hence, the skin condition seems pretty interesting. And it is. 

Mayo Clinic summarizes it best. “When people who have dermatographia lightly scratch their skin,” the page states, “the scratches redden into a raised wheal similar to hives. These marks usually disappear within 30 minutes.”



This means any time I scratch or itch myself, red markings will temporarily imprint themselves on my skin. This also means that, yes, you can write your name on my skin with your fingernails. And yes, it will show up for a while.

On nearly every medical page discussing dermatographia, the authors constantly reassure the reader that the condition is not harmful. From personal experience, however, I attest to that. My body will itch from the inside out if I do not take a certain allergy medication every 24 hours. It is incredibly irritating and hindering to go around without my medication, and I genuinely will be driven insane if I skip it more than once. My medication for dermatographia is a life necessity.




That said, dermatographia has always been a cool party trick of mine. When I explain my condition to people, everyone goes around autographing my body with their fingernails and uninked pens, watching red signatures arise from my skin. It is really neat. I just wonder what will happen if I ever get a tattoo.

PART II: SHAPE

Speaking of party tricks, here is a more dangerous one I tend to toss around.




I know, I know. How can it even be humanly possible for skin to stretch like that? Well, this answer will have a bit more simplification than the previous one.

I have Ehlers-Danlos Syndrome (EDS). There are several different types of EDS, but I have the hypermobility type, currently stylized as hEDS.

According to the National Center for Biotechnology Information, the following are some of the major clinical characteristics: soft and mildly hyperextensible skin, joint instability, bone density, chronic pain, cardiovascular problems, and psychiatric problems.

The above listed are the characteristics I fall under, but feel free to check out this page to learn even more of the diagnostic criteria. 



In order to be diagnosed with hEDS, I had to partake in a quick diagnostic evaluation system known as the Beighton scale. Below are a few images depicting some requirements I had to fulfill to fit under the criterion for hEDS.




Luckily, I can say I have the least severe of the EDS types, and I am very grateful for that. But no matter which type one may fall under, there are a lot of genetic side effects that stem from the syndrome.

EDS acts as the primary culprit of my psychological troubles, difficulty exercising, joint and bone problems, as well as yet another party trick to show off at the flick of a wrist-- literally.



A lot of different people struggle with a lot of different physical tribulations on the daily, no matter how obscure or well-known the physicalities may be. Often, these physical trials result in negative psychological repercussions for the person diagnosed. It is out of our control.

I consider myself lucky to grapple with the more mild conditions out there (albeit, I have a lot of them. This is not the half of it!). Yet still, my dermatographia and hEDS require me to pay extra careful attention to my body and its needs, as these little known “party tricks” cause me to spiral on the daily.


I encourage you to take that extra step in physically and mentally taking care of the people around you. You do not know what lifelong struggles they fight every day, and how hard it may have even been to get out of bed in the morning. Life is hard enough as it is, so it is worth making the day worthwhile for everyone you meet. 



By Danielle Leard

3 comments

  1. this is so good and i love this wow

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  2. DANIELLE HOLY CRAP THIS IS GOOD

    ReplyDelete
  3. I have had dermagraphica before about 20 years ago. It was because of the high levels of lithium medication in my body. I stopped taking it and it went away. Simple as that.

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