1295My name is Ses. I am a forty year old, fun loving, joyful gal.
I love my husband and my family more than words can say. I am one of the lucky ones. I have an amazing support system. My mom has been my cheerleader, fierce defender, and personal Sherlock Holmes thru my journey to diagnosis. My amazing husband is my rock as well as my soft place to land. I have a brother, sister-in-law, and niece that have my back at all times too. Family means the world to me and they truly keep me going thru the rough patches.
My journey to diagnosis has been a rough adventure. I started out as a baby that needed corrective shoes to even stand correctly. I stood on the insides of my feet. The doctors in 1974 weren’t as knowledgeable about pediatric connective tissue disorders so they simply suggested my mom stick me in ballet to strengthen my ankles and knees. This started my love affair with dance and subsequent damage to joints from my belly button down. Fast forward 15 years I was diagnosed with Elhers Danlos Disease. We thought that’s it. I had an answer to my chronic dislocating joints and immense pain. Boy was I wrong. That was just the tip of the iceberg.  I continued to have excruciating pain that could not be attributed to EDS and my doctors were dumbfounded. I was put thru the wringer with testing to rule out other conditions. I had little knowledge of my fathers side of the family and their medical history. So I was at a loss there.
Fast forward another 15 years.
I found some family from my dads side and they said “you know your dad has AS.”
So at the ripe old age of 33 I got an AS Dx.
This road has been bumpy but it has been well worth traveling. I enjoy everyday I have. I am in a wheelchair more days than not but I don’t care. I have a fun life and I try to make every day better than the last. Is it always flowers and rainbows?  Of course not. I don’t let it keep me down though. I kick ASs!


Texas, United States of America

One Response to “Ses”

  1. Dear Ses,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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