35 Long Years

By Kassie, Ehlers Danlos Syndrome, United States, February 25, 2021

Kassie The Zebra

My name is Kassie Benoit and I am 57 years old.  I was born and raised in New York, but moved to Las Vegas with my parents when I was 15.

  I always knew I was “different” growing up, but never knew why.  I was “double jointed”, seemed to get hurt easily, had a lot of aches and pains (my parents said were “growing pains”), couldn’t keep up with my friends, etc, etc…. but I muddled through childhood with no major issues.

  At 21 I was planning my wedding.  A day I had dreamed of all of my life.  I suddenly began to have bowel issues, which I attributed to nerves with the upcoming celebration.  However, it only worsened even after the big day was over.

  The doctors ran some tests and told me I had Irritable bowel syndrome.  I read up on it and didn’t really believe that’s what it was, but I took the doctors word for it.  The medications didn’t help.

  To make matters worse… much worse…. I started to have horrible panic attacks any time I attempted to leave my house.  I had to quit my job because of it.  My life as I knew it was turned upside down.

  The doctors told me that my problems were “all in my head” and referred me to counseling.   They convinced me that I was crazy.  Deep down I knew that my problems were physical and not pyschological.

  Then the pain and fatigue began.   Aches and pains from head to toe with no apparent reason.   I never knew how I’d be feeling from day to day.  I had no energy to do anything anymore, and this led to depression.

 After 7 years of suffering I stumbled onto an article in a magazine one day about Lupus. (We didn’t have home computers and internet back then.)  Tears filled my eyes as I could so relate to so many of the symptoms.  I scheduled an appointment with a rheumotologist, praying that this was my answer.

  She was the first of many doctors who seemed to take my complaints seriously.   She ran a test for Lupus, but it came back negative.  Another disappointment for me.  I didn’t WANT to be sick, but I knew that I was and I just wanted… and needed… answers.  The rheumotologist diagnosed me with Fibromyalgia.  Back then it was barely heard of.   I tried to accept that diagnosis and get on with my life, but I knew that they were missing something.

  I continued to live many years just trying to take life one day at a time.   I had a very supportive husband who I depended on for so much.  I raised two amazing kids, and now have 2 beautiful grandchildren.  I tried to focus on all the positive things in my life.

  About a year and I half ago, while bending over one day, I pulled my Piriformis muscle.  Just another weird thing that always seems to happen to me.   The doctor ordered an MRI and when the results came back I was told I have Tarlov Cysts on my spine.  I had never heard of those, so I began to research.  Most doctors believe that they are asymptomatic, and sometimes won’t even be mentioned if seen on an MRI.  I got lucky.

  I joined an online support group and learned that a lot of people with these cysts also had another rare disease called Ehlers-Danlos Syndrome.   This changed my life.

  Shortly after I began my research I just happened to have appointments with an orthopedic surgeon, a physical therapist, and a dermatologist for a skin condition called Granuloma Annulare.   I mentioned EDS to all of them.  They each gave me a quick look-over and highly recommended that I see a geneticist to be tested.  That got the ball rolling.

  My doctor set me up with a phone consultation with a genetic counselor.  She asked me a ton of questions.  Although I was adopted as an infant, I had located my birth family years ago, and knew some of the history.

  My birth mother died from a ruptured anurisym at 54 years old.   She, too, had bee diagnosed with Fibromyalgia years prior.   And 2 of her sisters also died young from ruptured anuryisms.   Perhaps they had EDS and never knew it?

  My insurance company couldn’t find anyone to diagnose or treat me here in Las Vegas.   After several failed attempts to send me to California they finally found a doctor in Phoenix who specializes in EDS.

  I waited 3 months for my appointment with Dr. Saperstein, and prayed that he would finally have answers for me.  I knew that this would be my last chance.

  He examined me from head to toe, had me bend in ways that I didn’t know I could bend, and asked me so many questions.   I scored a 9 out of 9 on the Beighton Scale.  He almost immediately diagnosed me with Hypermobile Ehlers-Danlos Syndrome.  That was the moment that changed me life!    The diagnosis I fought to get for 35 long years!

  It’s only been a little over a year since finding out that I’m a zebra, but it was the missing puzzle piece to my life.   I never gave up looking for answers, and it has made such a big difference for me.  When it comes to our health we are our own best advocates.   Keep fighting for yourself.


*Find others with Ehlers-Danlos Syndrome on RareConnect, the online platform for people affected by rare diseases

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