When members of the Dream Factory of the Jersey Shore met Louis Santos, he was 13 years old and in the 8th grade. When talking to him, you would not know that he has Postural Orthostatic Tachycardia Syndrome(POTS) and Ehlers-Danlos Syndrome (EDS). He’s an upbeat, engaging young man. He will often ask, “Why Me?” and his family will tell him, “Because you are strong enough to handle it.” Louis’ mother says, “It may get to him, but it will not beat him!!” Louis has such a wonderful positive attitude toward life!
Louis began showing symptoms at the age of 5, with stiffness, pain and the inability to move his head. The symptoms subsided and the hospital sent him home. Ehlers-Danlos Syndrom is difficult to diagnose. It is a group of genetic connective tissue disorders, classified into 6 different types which affects joints, spine, organs, etc. causing them to be extremely unstable resulting in chronic pain, constant dislocations, and many other complications that aren’t necessarily visible to the naked eye. Louis was finally diagnosed in 2013. He is very flexible or hyper-mobile as they call it. In addition, Louis has a cardiac problem causing his heart to race; his heart rate goes up while his blood pressure drops. This condition makes him get dizzy or pass out. This is a life long degenerative disease that there is no cure for, only the treatment of symptoms.
Because of Louis’ physical limitations, sports has been a problem for him. Since third grade, Louis has played the drums. He plays in the school band and also in a Jazz Band. Like any other kid, Louis loves video games. He is a Boy Scout 1st Class and will be entering the Order of Arrow and on his way to Eagle Scout. Louis is also a budding author. He loves to write stories. He is looking forward to entering high school in the fall and joining the marching band. He has a passion for rocks and gems and his goal is to become a geologist.
Louis’ dream was to swim with the sea lions. The Dream Factory of the Jersey Shore sent Louis and his family on the Norwegian Cruise Lines’ Escape for a one week cruise to the Caribbean where Louis had an opportunity to feed and interact with the sea lions at Coral World Ocean Park in St. Thomas. Louis enjoyed the vast amount of activities available for kids while on board the ship. He took advantage of all the kid’s experiences leaving his parents to fend for themselves. According to Louis, the wings at O ‘Sheehans restaurant on board the ship were GREAT!
Louis has started a Facebook page to help raise awareness for his fellow “Zebras” with Ehlers Danlos Syndrome, POTS and dysautonomia, one like at a time. Why zebras? The Zebra has become a symbol for rare conditions leading the EDS community to adopt it. The diagnosis of diseases like this seem to be on the rise. The severity of each person’s symptoms is what makes the pain and issues they suffer individualized and a personal battle. Having a sounding board seems to help Louis; having a group support page, makes it easier to share and see what others are going through on a daily basis. With some days being worst than others, it makes those “bad days” a little easier to deal with. Louis would like to see his Facebook page get to 400 Likes. Help him reach that goal and see what he is up to: Living Bendy with Ehlers Danlos Syndrome