DMITRY KOZEMASLOV

Ehlers-Danlos syndrome

Ehlers-Danlos is a rare syndrome.

Not every doctor in Russia knows about it, let alone ordinary people. In short, it is a genetic disease associated with a disorder of collagen synthesis. Since collagen is the main component of connective tissue, its production failure affects the skin, ligaments, joints, muscles and blood vessels.

In my case, it resulted in hypermobility of joints, decreased skin regeneration function and hyper elasticity.

The skin is as thin as paper, so it tears easily.

Add to this an unsteady walk because of joints always popping out, and you get a person who spent his childhood in a trauma center.

I refused to accept the restrictions and was as active as possible.

That is why every week I got stiches or bandages. There were times when on my way to a hospital I got hurt again. Other kids just fell, got up, and ran on. I would fall and get up too, but with shoes full of blood. I have a permanent disability.

As I grew older, I realized that I needed to pay more attention to my health than the average person.

For me, sport is a necessity rather than keeping the body fit.

Muscle tone is vital for the proper functioning of joints, reducing their mobility and sprains.

I work out every day, sometimes for several hours in a row, and now I benefit from my muscle tone and corset. I used to have dislocation any time I jumped, today I am a motocross rider and a snowboarder.

I understand that I will age earlier than normal people, but I don’t care about that.

What really scares me is that there are severe forms of Ehlers-Danlos syndrome that could be passed on to my children.

On the other hand, that did not prevent my grandfather or mother from having a family and living a full life.

Challenges can help us learn and grow. My unique beauty has toughened me up, taught me to live consciously, led to constant self-improvement and self-discipline.