LEARNING & EDUCATION

Fighting Invisible Disease

Rare Disease & Syndrome

Niklas Emilio

i hope this story about Invisible Disease will spare you some pain and trouble

My name is Niklas. In 2010 I was hit by a motorcycle. As a result of the accident my left femur broke twice and about 5 cm of the bone was dashed to shivers. With the aid of physical therapy, I learned to walk again during the next half year and everything seemed fine.

5 years later, all the nails and screws had been removed but I faced intense pain and immobility again. The doctors that I consulted with told me it is probably just an inflammatory reaction that will ease after a while, they left it at that and sent me home and just prescribed anti-inflammatories and pain medication.

One day my doctor decided to make another x-ray and we could clearly see the hip joint had collapsed and lost it's round shape, it was edgy and deformed. This condition is called avascular necrosis, where the bone starts to die due to a lack of blood supply.   Now I'm in kind of a weird situation, I can't get my joint replaced because at the age of 24 I am considered too young for this surgery. But still, taking pain medication is not a long-term option because of the side-effects.

Nevertheless, I am trying to enjoy life as much as possible. Besides work I study on the weekends. I am still allowed to swim, dive and ride bicycles. Through workouts I try to stabilize the joints supporting muscles. My brother and I bought an old windsurfing board. By the beginning of this year, I would love to try it out- it would be so cool if this still works.. I'll have to find out this summer.

This problem can affect any bone/joint and can be caused for example through alcohol abuse, pregnancy, steroids, cortisone/prednisone, trauma like in my case and sometimes without a reason at all. There are treatment options available but only throughout the first stages where the bone shows no signs of collapse.

It can only be detected by MRI tests, not through common X-Rays! I would hope that the awareness for this invisible disease increases, maybe it can save someone’s joints if it is detected and treated early on!

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