EDS - The not so invisible ‘invisable’ disability

Our goal is to create a beautiful independence, to help people be mobile again. When they discover our protective helmets , their world changes. We had a talk with Brooke Strahan on how her Ehlers Danlos Syndrome impacted her life.

"Many people, including medical professionals will sometimes state that Ehlers Danlos Syndrome is an ‘invisible’ disability. In a way, they are correct, but for some, this is definitely not the case. "

"I have the type three EDS - Joint Hyper-mobility. I was born with this connective tissue disorder. I came into the world breach birth. “Prettiest baby in the hospital,” the midwife told my mother; and I was. I was pretty because my head hadn’t been squished like all the other babies, but I did have a bruised backside. ""My mother was advised to put me into double nappies as to try to secure my hips, but of course this didn’t do anything much because you can’t replace the collagen you are lacking. In case you aren’t familiar with EDS, it’s a connective tissue disorder where a person’s body doesn’t produce functioning collagen how it should. It affects the connective tissues including joints, skin and vessels. How and what it affects with depend on what type of EDS you have, as I said, I have the joint hypermobilty type, but it’s not just like I have loose joints and that’s it, there’s so much more going on..."

"I never crawled as a baby. I just bum-shuffled around on the floor and pointed at things and made some noise and my elder brother would run and get the toy I wanted for me. One day, I just got up and walked. I did however, walk kind of like a duck, with a real waddle or sway through my hips and at almost forty years old, I walk like this today. My family nicknamed me, ‘Daddles’ because of me waddling like a duck. I am still affectionately called ‘Brookie Daddles’ by the family. "

"I can not remember never being in speech therapy. There was a Garfield cartoon on the wall of the waiting area and a beautiful dolls house in the therapy room. As a reward after my therapy, I would get to play with the dolls house for a little, while the speech therapist took my mother through all my speech homework. "

"Both crowded teeth and speech impediments are not uncommon in people with EDS. I’ve had braces on my teeth twice. It wasn’t until around sixteen years of age that my speech impediment became less obvious. I now have a different way of speaking; articulate, slow and thoughtful, but every now and then I just can’t get a word out. ""I mentioned earlier that my joint hyper mobility is only one symptom of my type of EDS. It is the most obvious ‘Visible’ symptom, but there are many others. They include fragile skin, bruising easily, flat feet, dry skin and circulation problems (my toenails fall off all the time), brain fog, anxiety, loss of memory, concentration issues, bloated stomach and stomach issues and as stated above, teeth and speech issues. "

"My EDS highly affects my mobility. In one way, I’m like Wonder Woman because I can scale a six foot wall with no problem what so ever. On the other hand, I can be walking along on a flat road and all of sudden be on the ground. The reason I can scale a high wall easily is because my joints are so hyper-mobile it makes me extremely agile and I can hyper extend. In a way, it’s almost like a super power. The reason I can be walking along then suddenly on the ground, is because the joints are so loose and unstable that they can just give way. "

"My unstable joints make me prone to falls. A few months ago I had a traumatic fall down a full flight of timber stairs ( thirteen treads in total) and ended up with a broken lower spine and a few other injuries. I have to say though, even though my hyper mobility is what caused my fall, it is also what saved me. If a non-EDS joint hyper mobile person had had the same fall, they almost definitely would have been much more seriously injured. "Since my fall, my vigilance has improved in regards to wearing my bracing around my hips/lower spine and also my knees. I am also now the proud owner and wearer of two Ribcap products, the baseball style hat and also the beanie. I love how ‘Protection meets fashion’ in these beautiful crafted pieces of headwear and at-risk persons like myself can wear head protection without the worry of any stigma.