Shaving 1.4m dreads for Ehlers Danlos charity!

My partner Steven has been growing his hair for 12 years now and the time has come for a change, and what better way to celebrate that change by raising money for a cause that needs it?!

The Ehlers-Danlos Syndromes are a group of 13 rare connective tissue disorders affecting different types of collagen in the body. Some types are as common as 1 in 2500-5000, while other types are as rare as only having a few cases ever recorded in medical literature.

I have Ehlers-Danlos Syndrome myself, which is why we picked this charity. Due to collagen being the most abundant protein in the body, that sticks everything together, a fault in collagen can result in disaster. Daily joint dislocations, fragility of veins, organ rupture, spinal instability, fragile easily torn and bruised skin, just to name a few symptoms of the various types. This condition can also cause a host of other conditions including but not limited to, gastroparesis, intestinal failure, postural Orthostatic tachycardia syndrome, mast cell activation disorder, chiari malformation, scoliosis, many of these conditions also being rare in the general public.

There is only one specialist for this condition in the whole of New Zealand and this needs to change. Many cannot access him as EDS leaves many of us disabled. Most doctors know little about this condition which makes getting treatment very difficult. Complications from this syndrome and in some cases even the syndrome itself, can be life threatening.

This is why we desperately need awareness and funds, to research and not only educate clinicians, but the general public. If it hadn’t been for someone else spreading awareness I would still be undiagnosed. No one should have to suffer alone with no answers just because they weren’t born with a common condition.

We are planning to do the shave on March 15th. This is the birthday of Stevens late brother who’s body he found in 2010. He feels in a way this will be saying goodbye to a part of that trauma as he got his hair dreaded only a few months before the death. In his own words, they have been a curtain for him to hide behind for years, he’s always been the guy with the dreads, dreads dude, the dreads guy, etc etc. Now it’s time to see who Steven is, behind the curtain.

Let’s make this fundraiser something special, as these dreads are only coming off once!!