Sometimes you just have to do it yourself


Have you ever not dared to do something because you thought you knew too little or were not trained enough to do it? Or maybe the challenge seemed too big to take on? Well, I certainly have, but after hearing the following story, I am inspired to push my limits more often.

Sharon Terry could not be stopped by any obstacles she encountered on her path. Bad luck put her in an unfortunate situation: Both her children were diagnosed with Pseudoxanthoma Elasticum. Instead of letting herself be overwhelmed by the revelation, she faced her fears and decided to fight. Little was known about PXE before this amazing woman and her husband took matters into their own hands.

To start with, the couple neither had a scientific background nor any medical education. She had a master’s degree in Theology and he was a construction worker. However, they taught themselves and managed to do what scientists before them could not – they discovered the gene carrying the mutation in PXE-patients, which helped immensely in understanding the disorder. Furthermore, Sharon and her husband launched PXE International, a website about everything concerning the disease, and founded Genetic Alliance, a network engaging individuals, communities and researchers to transform not only health systems but also research itself.

 “You can’t herd cats. Well, you can, if you move their food!”

 

What is PXE?

Pseudoxanthoma Elasticum is a rare inherited disorder, which causes minerals like calcium to be deposited in select elastic tissue in the body. The elastic fibers become brittle and degrade into smaller pieces. As a result, there are changes in the skin, eyes, cardiovascular and gastrointestinal system, such as loss of central vision, arteriosclerosis, inner bleeding and skin changes. The severity of effects and progression of the disease can differ from person to person, but an ultimate cure is not available yet. People live with it, but they have to maintain a very healthy lifestyle with a low fat diet and lots of exercise to prevent more severe complications.

Watch Sharon Terry telling her story and learn how she found a way to overtake her fellow researchers.

Header image credits royalty free

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