Destiny's Story

My name is Destiny, and I'm not your typical teenage girl...I'm fighting an unseen battle. I suffer from a rare disease. Vascular Ehlers-Danlos Syndrome. It causes my body to produce faulty collagen and makes it so my joints pop out with the slightest of movements...For example, I broke my wrist last summer because I lifted my computer up with one arm!

I have a variety of secondary conditions, some including epilepsy, kidney and liver problems, Chronic A-fib of the heart (irregular heart beat) and battling against progression of these conditions. Below is a little bit more about various secondary conditions.

 

"My path is a difficult one, but I am choosing to fight it with encouragement and smiles


My stomach is completely paralyzed from Gastroparesis causing me to be malnourished, constantly nauseous, and constantly puking any food I eat. I'm on a pure liquid diet and rely on IV's for my nutrients. I've recently started TPN for the past several months, this is nutrition and feeding through a central line that connects into my heart.

 

Last year, I was also told I have a brain tumour that is causing major vision problems and changes along with a variety of other issues. My path is a difficult one, but I am choosing to fight it with encouragement and smiles, and the support of friends, and family from all over the world!

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