DAILY LIVING & MOBILITY

Medical Trailblazer: Finding Hope with Ehlers-Danlos Syndrome

Rare Disease & Syndrome

May Enos

living with Ehlers-Danlos Syndrome

If doctors said you were dying from a life-threatening infection and you survived, how hard would you fight to keep living? If doctors told you it was a miracle that you survived childhood, how hard would you fight to be seen and heard as an adult? If a nurse told you that you were slowly slipping away, how hard would you fight? Welcome!

My name is May Enos. I am 25 years old living with Ehlers-Danlos Syndrome, Gastroparesis, Dysautonomia, Immunodeficiency, autoimmune disease, Kyphosis, and so much more, and I am a medical trailblazer fighting for my life. . This means that my body has faulty or missing collagen- with the inability to build strong collagen (the glue that holds the body together) essentially my body is falling apart. I have been told it’s only a matter of time before I become paralyzed due to spinal instability, but that is not what scares me. I’m not sure much of anything scares me now since I have been slowly starving to death, being unable to get adequate nutrition. My stomach is paralyzed, and oral nutrition causes serious allergic-like symptoms, though test after test has revealed no true food allergy, I continue to react to everything orally. Treatment has been no better. Still I hope. Illness may take my ability to eat, see, speak, or walk as it has been, but I find it hard to let go of the concept that my life has a purpose and a mission. So, I will fight, and I will trust that things will work out even when things feel completely hopeless. A doctor recently told my Mom it was a miracle that I survived childhood and compared my case to a lot of his NICU patients who did not fair very well, yet I look normal and healthy. You wouldn’t know anything is wrong or different about me just by looking unless you see my feet fall to the side due to hypotonia, my inability to maintain eye contact, the feeding tube I am hooked up to 12 hours a day, the braces I wear to hold my joints in place, or the wheelchair I am sitting in. You just don’t see the nausea, debilitating pain, silent seizures or countless other symptoms.

Never Give up

Being the first in my family to be diagnosed with Ehlers-Danlos Syndrome has been a challenge to say the least. Someone once asked me if I blame my parents or hate God for allowing me to go through this pain, but I couldn’t hate the people who have always loved me and supported me through it all. Even when my parents have no idea how to help me, even when they had no idea who to turn to or that anything was seriously wrong, they were and always have been there for me. In many ways I am a medical trailblazer in my family and it’s been challenging but I’m realizing something is not right with my genes and this is something I desperately seek answers for. This is a cause I will continue to fight for. Maybe my loved ones will never want to know what I go through, or what is making me so sick, but if they do I’ll hopefully have better answers for them someday. I am extremely grateful for the days I can see, speak, and walk because even these are taken from me at times as a disabled- occasionally mute, visually impaired, feeding tube dependent, ambulatory wheelchair user. I know life can be difficult and that most people wouldn’t understand the struggles we go through, but I also know that our smiles, laughter, and personalities can still brighten the world even if we struggle beyond measure. Keep fighting and hang in there because we are all needed in this big world, even if someone tells you otherwise. I hope that by sharing my story I can offer hope to others going through what I am going through. I hope that by sharing my story I can offer hope to those experiencing complex medical issues, who are being told “I can’t help you” by medical professionals and are being judged or bullied by others. You still matter, even when it feels like your life is pointless, I am here to say, “you matter. Your life matters, and your story deserves to be heard. Please, don’t give up.”  

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