Category: Real Life Stories

How people look at you if you are using a wheelchair without being paralyzed.

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How people look at you if you are using a wheelchair without being paralyzed.

A personal story by Karina Sturm

With a chronic condition like Ehlers-Danlos Syndrome I am used to aids like bandages for all my joints and neck braces but usually I try to hide them as much as I can.  I do not want to look sick.

But there are situations when you need to accept extra help, like at the airport after a 10 hour flight.

All my joints hurt and I had the worst brain fog ever.  I had to book airport assistance and a wheelchair and I needed help with my luggage.

Last year it was the first time I had to use the wheelchair and I had no idea what this would mean to me.  I am a very stubborn and proud person and had a hard time to accept that I am chronically ill with a huge possibility of getting worse.

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The Scariest Night Of Our Lives

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Today’s post is coming from a worried momma.  A momma who is looking for ideas and answers.  Below you will find another personal story.  I know this is the second in a row but it’s one that is weighing heavily on my heart.  It was the scariest night of my ENTIRE life.

Scariest Night

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The Early Years- “When EDS Was Still Fun”

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Picture for blogHi!  I am a married Zebra mom with two (diagnosed) Zebra teen girls and one teenage son.

Why do I refer to us as zebras?   You can find those details here.

The accessories at our house tend to come from a brace catalog, more than Glamour magazine, but the good news is… we match!  I am currently involved with two blogs, spreading EDS (Ehlers Danlos Syndrome) Awareness, making crafts, homeschooling my youngest daughter and various volunteer activities in my town.  I had not planned on sharing my story when I began this blog, but after multiple requests for my story, I felt I should share it here and make it accessible to everyone.  To me, my story is boring and uninspiring, so I keep sliding it to the bottom of my stack, but here goes….for all those who have asked.

My Story:

Part 1 –The early years with undiagnosed EDS; when being bendy was fun.

I had a fairly normal childhood, with accidents and illnesses.  I was sick more than any kid I knew, and it seemed to always be due to allergies or sore throats.  I was constantly on an antibiotic or home sick.  I was accused of being anorexic, anemic, bulimic and anything else that had been thought of in the 70’s and 80’s, but every test was negative.

I can actually remember my age or where we lived based on the illnesses and injuries I experienced.   Who, besides an EDS patient, does that?

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Christal’s Journey to Diagnosis- Real Life Story #7

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Christal's Journey to EDS Diagnosis FB

Christal’s Journey to Diagnosis

I was born in a small town Florida in May 1972.

I was born with a cleft palette and later on they found hearing loss.

I was five years old when they started repairing my cleft palette and began putting tubes in my ears.  Through the next couple of years they put several sets of tubes in my ears.  In my early childhood my Doctor’s name was Dr. Doorman from Lakeland, Fl.

In kindergarten I started speech classes and they ran hearing tests.  I attended almost 4 years of speech class.

In middle school I of missed lots of school due to Dr. appointments.  I fell behind really bad.  My hearing loss was making it hard to keep up.   I began not participating in PE because when I did I was non functional due to pain.  Missing school and friends became a routine for me.

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Karen’s Inspiring Story Part 2-Life With Marfan’s

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Karen’s Inspiring Story

Life With Marfan’s

Part 2

Karen's Inpsiring Story of Life With Marfan

I was so very appreciative that I finally got to experience it.  Tree branches were no longer just green colored arms sticking out of a tree; they were suddenly branches that had beautiful vibrant individual green leaves on them.  Flowering plants weren’t just a blob of color anymore; they were a beautiful living creation from God, with their own blooms and leaves, and little bugs that crawl on their petals.

Want know what Karen is referring to?  Read the beginning of Karen’s story here.

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Karen’s Inspiring Story-Living with Marfan’s-Part 1

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Karen’s Inspiring Story

Living With Marfan’s

Part 1

Karen's Inspiring Story of Life With Marfan's

My name is Karen and I have Marfan Syndrome.

I accept my disease and am actually grateful for it.  Having Marfan’s has helped make me who I am today………and if I must say so myself, I think I’m a pretty cool person.

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Real Life Story #5- Rikard’s Life With Marfan Syndrome

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Rikard’s Life With Marfan Syndrome

My name is Rikard and I have Marfans Syndrome.  Despite that, I consider myself quite fortunate in my situation.  I am 24 years old.  I study to become a lawyer and go to regular doctor check-ups, both of which are free.  (I’m a Swede living in Sweden.)  I exercise several times a week, maintain a healthy diet and generally manage the complications from my diagnosis.  If all else fails, I have friends and family who look out for me and know about the symptoms of my disease and side-effects of my medication.  All in all, I suppose I am quite lucky.  Unfortunately my father wasn’t.Continue Reading the full Article…

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Real Life Stories #4-Awaiting Diagnosis Marfan Syndrome

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Awaiting Diagnosis

Real Life Story #4 Rachel's Marfan Journey

Hi!  My name is Rachel.

I am 14 and a freshman in high school.

I enjoy designing clothes, reading books, hanging out with friends and watching movies.  I like creating stories and drawing.

I have been diagnosed with severe scoliosis, flat feet, severe vision issues, Ehlers Danlos Syndrome Type 3, Postural Orthostatic Tachycardia Syndrome and Mast Cell Activation Syndrome.

I am currently awaiting gene testing results for Marfan Syndrome.Continue Reading the full Article…

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The Story of Me (In verse).

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For further details on her illnesses, simply click on the highlighted words.


Rachel Poem

My name is Rachel.

   This is the story of me.

My body is full of surprises, as you will soon see.

I have strange joints, not just elbows and knees

 but ALL of my joints are really bendy.

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Real Life Stories #3-Marfan Journey

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Jennifer’s Journey

Jennifer Cross Photo

My Name is Jennifer Cross

I was born in Springfield Illinois on October 1st 1972 ( I accept birthday gifts all year =) )

I am the middle monster of 3 kids.  My brother Jeff is 47 (Marfan’s and valve replacement at 32 like my dad and ticks) and my sister Jeanine is 41 has Marfan’s and no surgeries (we are polish twins ) Most of my childhood was spent outdoors…even more when we moved to Clearwater, Florida in 1980 following my father’s valve replacement at the age of 32.  My dad was 6’4 handsome, fun, and always loved being outside so moving to Florida was ideal since shoveling snow was not a great idea for him.

I remember sitting at the dinner table, hearing a “tick” on some nights and on others nothing.  That was the sound my dad’s heart made after his surgery.  My family didn’t discuss such things as health etc.. so I just thought it made my dad even more special .

At that time little was known about what my dad had.. Marfan’s Syndrome.

I never gave it any thought..

Then I became a teenager..Continue Reading the full Article…

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