I bet you are wondering why this post is titled Zebra Strong and why the zebra feature photo. Well, it has to do with my son, Braydon, and his diagnosis. If you have been here a while and followed Braydon’s Journey since February 2020, then you know he was finally diagnosed with EDS last year. But you may not know what it is. Well it stands for Ehlers-Danlos Syndrome. So why am I taking time to write about it now? Well it is…
Ehlers-Danlos Syndromes & Hypermobility Spectrum Disorders Awareness Month
That is a mouthful! And important to us. Almost every time we mention it to someone (including doctors) they either have never heard of it or say things like “it just means he is flexible.” No that is not JUST that he is flexible.
In the beginning of 2020 when Braydon was in a wheelchair unable to walk and in intense pain we saw doctor after doctor that told us it was in his head. But never sent up to a psychologist to evaluate him. I knew that was NOT correct. After over a year of fighting, tests, more doctors, and no answers, we pushed hard for then to send us to Stanford Children’s. Once their we were finally listened to. They got us to the right doctors that listened and searched for anything and everything that might fit his symptoms. When they sent him to a pain management doctor, they were the one that figured it out. They understood and gave us answers, a plan, and helped. That was when Braydon was first told he was on the Hypermobility Spectrum Disorder (HSD).
A few months later he was given the Ehlers-Danlos Syndrome (EDS) diagnosis. Specifically he has hEDS or Hypermobile Elhers-Danlos Syndrome. Like many people, doctors included, we thought ok we know he is flexible. He has always been super flexible. But it is so much more than that. Below is just a little bit of what I have learned about EDS.
Ehlers-Danlos Syndrome is a connective tissue disorder and there are 13 types of EDS that each have their own genetic cause. Braydon has hEDS (hypermobile EDS). It is the only type that has an unknown genetic type. Each type has its own symptoms and they all can include joint hypermobility, skin hyperextensibility, and fragile tissue.
Joint hypermobility is when someone’s joints have a larger range of motion than usual. Some can also have joint subluxations, dislocations, sprains, and other injuries. Which causes both acute and chronic pain and can disrupt daily life. Braydon has a lot of this and it explains so much over the last few years.
Skin hyperextensibility means the skin can be stretched beyond the normal range, and they can have other symptoms, like unusual skin texture, fragile skin, very thin skin, delayed wound healing, and abnormal scarring. However, not everyone with EDS has these.
Fragile tissue is when the body’s organs and other structures are more vulnerable to damage. Damage like easy bruising and poor wound healing. It can also cause severe fragile skin, blood vessels, abdominal organs, eyes, gums, and bones.
So why the Zebra?
In the medical field the zebra represents an uncommon illness or syndrome. The Ehlers-Danlos Society selected the zebra as their emblem because EDS is uncommon and, like a zebra, no two patients with EDS are identical. To read more about why the zebra from the Ehlers-Danlos Society, click here.
Currently, Braydon is learning to navigate another diagnosis that is super connected to EDS. In March, a new set of symptoms started arising. Increased resting heart rate, dizziness with sitting up or standing all the time, and fatigue. After fighting to get the pediatrician to hear us, going to urgent care and ER with no help, I finally threw a fit and got a different doctor to see him. I am glad they did because they found he also has POTS (Postural orthostatic tachycardia syndrome).
We are just over a month in to learning how to navigate these new symptoms. So far he is navigating it pretty well. He does have good days and bad days. Thankfully, he is a pretty go with the flow kind of kid so he is really good a pivoting when EDS or POTS throws him for a loop. Aside from waiting for the genetic testing to come back, we now have answers and are learning what works and doesn’t for him, along with having all the things on hand in case he needs to try something new.
I am so proud of him and all he has pushed through over the last 3 years and that he has remained strong. As the Ehlers-Danlos Society likes to put it, he is “Zebra Strong!” I cannot wait to see what the future holds for my boy.
If you would like to donate to the Ehlers-Danlos Walk & Roll Challenge to help raise funds to help with advancements in research, advice and support, and education of health professionals to care for EDS and HSD patients, go to our link at https://tiltify.com/@keenfamily/shine. We will be walking throughout the month as we help raise funds. More resources are needed for people with EDS and HSD.
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Ann Keen Photography is a portrait photographer based in Auburn and Palm Desert California. Ann offers high school senior portraits, family portraits, couples portraits, headshots, and branding photography all over the state California. Contact Ann to book your custom session. To see more of Ann’s work, visit her website or check her out on Instagram.