The Reason for the Shadow Ride

Michelle RelaxingMy name is Michelle MacMeeken. I suffer from a rare blood disease called Erythropoietic Protoporphyria. My husband’s decision to do this horse ride for Porphyria awareness is very special to me. I’m a nurse, but have not been able to practice for several years due to my health. My form of porphyria causes severe pain to my skin after exposure to sunlight and other forms of UVA/UVB rays. In addition, I get horrible stomach and bone pain. Isolation and depression go hand in hand with this disease.
Through this ride, I hope to raise awareness of the disease, especially to medical professionals, but also to help others who are suffering from one of the eight types of porphyria. It has been said that there are not enough of us with porphyria to matter. But I say we do matter! And we’re going to make a difference, for those suffering with the disease now, and fort hose who will be diagnosed in the future.

 

Scott and Chance selfieAnd that’s where I come in….I am Scott MacMeeken, son of the late Alton and Patricia MacMeeken. I have been around horses my entire life. I bought my horse, Chance, four years ago when he was three years old. He is a Tobiano Paint. Mywife Michelle and I met three years ago in Black Mountain, NC. Until I met Michelle, I had heard of Porphyria only while playing The Elder Scrolls Oblivion game which mentioned that characters contracted “porphyric hemophilia.” This is a fantasy version of vampirism based on porphyria. As a result, if you mention porphyria to many video gamers, they will ask “isn’t that something to do with being a vampire?”
So, as way off course as they may be, many gamers have at least heard of porphyria, where most medical staff have not. I find that sad. Since my relationship with Michelle, I have watched countless times as she was in agony with very little help from physicians. So I began to form a plan that could possibly change the lack of knowledge of porphyria.

This is truly a love story. Out of love for my wife, love for humanity and love for my horse. We ride to give awareness of porphyria throughout the medical field. We ride to give hope to those who feel that they have none. We ride to do our part to change the world in a positive way. Cowboy up!

Scott and Michelle  by Levi for Scott

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