My whole life I’ve thought I was meant for something. I always struggled with feeling like I was meant to do something big, but never knew or understood what that was. I went through my life wondering if I was taking the right path, because I always wanted the path to take me to my victory. Little did I know my path would find me, and my purpose would be sharing my story with others in hopes of spreading awareness.
A little backstory on myself: I was born with birthmarks and no pigment on 50% of my body. I have Port Wine Stains, which are purple marks on my skin [but I’ll get more into those later]. They are on my head, face, neck, chest, back, and left leg. Opposite my birthmarks I have no pigment, which is just white and unable to tan. I went through a lot of stages with my birthmarks and only have learned to accept them in the last ten years, I am now 30. The areas I have no pigment are hardly noticeable, since I have a very light skin tone.
Last year I was diagnosed with Klippel Trenaunay Syndrome with May Thurner Syndrome, which was a very hard thing for me to accept. These diseases are not caused by birthmarks, but often accompany them. I had 2 rare diseases, one being a chronic rare disease that no one had even heard of. No information and certainly no cure. I dealt with aches in my left leg my whole life, and I just walked it off. I was taught never to feel sorry for myself, and to walk through my pain. Now I was being told to listen to my pain, so my leg would be healthy.
So here I am, 29 years old at the time, realizing that my whole life I was so focused on the physical attributes of my birthmarks that I completely ignored the actual physical harm they could cause. Life has a way of putting things into perspective through harsh realities. I will get more into the diseases birthmarks often come with in another blog, but wanted to touch on them this blog so everyone would understand my purpose. I see so many people succumb to these diseases and let them control their lives. My disease will never control my life. I’ve had to make many lifestyle changes to avoid being in constant pain, but these lifestyle changes are good for me.
My purpose has changed. I share not only so people understand what people with this disease are going through, but I want to get rid of the stigma that being and looking different is unacceptable. There is no excuse for bullying. Ignorance is not an excuse when we all have so much access to information now. I hope to inspire others with rare diseases to find their own ways to cope and to be comfortable enough to share their stories as well.
I’m on a weight-loss journey, while going to school, working more than full time, and keeping my social life alive. It’s tiring, but very fulfilling. Through this disease I’ve found my new favorite hobbies: biking and swimming. Coincidentally, these are extremely good for my bad leg. I hope that in a year I will look back at this blog and see I’ve positively impacted other people, and have hit my weight-loss goal as well.