Letter From One Tough Zebra: Navigating the Countless Curves of Kyphoscoliotic Ehlers-Danlos Syndrome with Drive and Determination

Posted February 27, 2018

My fellow zebras,

My name is Larry Constant Jr. and I am 32 years old. I am a professional Audio Engineer and owner of an A/V Labor and Consulting business, NOLAV L.L.C. I share my life with my beautiful wife Carly who is a Registered Nurse and our furry son Winston, who is half bassett and half dachshund.

I have Kyphoscoliotic Ehlers-Danlos syndrome. I suffer from a severe spinal deformity with six bulging discs, abnormal/degenerative vertebrae, nerve damage throughout my entire body, deteriorated hips, ball joints, and sockets from dislocations, and sternum/rib deformities. I also have the same subluxations and joint issues as other forms of EDS, dysautonomia, and what many physicians believe to be an undiagnosed muscular disease. My most worrisome issues are an aortic enlargement in my heart, the shrinking of the space between my spine and lungs, and the possibility of future paralysis. I do match the description of my illness in EDS literature with the exception that I continue to walk without any ambulatory devices at my current age.

When I was younger, my doctors told my parents that I just had “growing pains” and I was accused of “faking it”. Another doctor told me I was going to die. I was in my early twenties when I received my diagnosis. My current doctor has helped to improve my life more than I could have ever imagined through Pain Management.

I only have bits and pieces of information about my condition because it is so rare, and new symptoms can really catch us off guard.

FAMILY: MORE THAN A BRACE, A FOUNDATION OF LOVE AND SUPPORT

I am very lucky to have two very supportive and loving parents who have never tried to hold me back from living a normal life even though they worry. My father helps me with all the hard labor projects that need to be done around my house. We have swung axes, lifted air condition units, and climbed on roofs together. I can always count on him for help and advice. My mother is one of my best friends and provides me with unlimited emotional support and love. We laugh together, reminisce, and enjoy doing lunch. I wouldn’t have made it this far without both of them. (I love you, Mom and Dad!)

My wife is my entire world and multiple times throughout the day I picture her to get through tremendous pain, continue running my business, or even just to get out of bed. She takes care of me, comforts me, and is amazingly patient. I am so lucky to have her and the worst pain I could imagine would be letting my illness win and losing time with her. I would live an eternity with this illness as long as I could live it with Carly by my side.

ZEBRAS: TOUGHER THAN YOU THINK

In the last few years, I have regained my ability to play guitar. There was a period where finger dislocations and nerve damage made it almost impossible to play, but through perseverance and very painful exercise I am proud to say…I’m back.

I want everyone to know it is very possible to fight and win battles even with the worst of illnesses. It will feel like you lose more days than you win, but you only have to win once. Then you can take a break and plot your next battle! I fully know and accept that I continually damage my body and worsen my condition living this type of life, but I am really living!

In the last few years: I have gotten married (I love you so much Carly and I will always fight to be right here with you), bought a house, opened a successful business, regained and learned new ways to perform hobbies, and helped many other people get started in the A/V field. I know it can feel lonely and helpless having any illness, rare or not, but I want you all to know you are not alone. I am right here, thinking about you and rooting you into battle.

Love,
Larry Constant Jr.

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