Real Life Stories #4-Awaiting Diagnosis Marfan Syndrome

Awaiting Diagnosis

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. Read more »

The Story of Me (In verse).

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

THE STORY OF ME

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.

Read more »

One Teenager’s Response to Living With an Invisible Illness

One Teenager’s Response to Living With A Chronic Illness

My teenage daughter was asked to write a narration with a moral for her comp class this year.  She is a senior.  She chose to write not only about her fight to help others understand what EDS is and how it affects her everyday life but how she is not going to let her illness ruin it.

(She is definitely her momma’s girl.)

  This is her paper in it’s entirety with links added to empower others with useful knowledge.

Do Not Be Ignorant

Once upon a time, in a not so far away land, lived a dark haired maiden.  She was your average, all around, American girl, but behind all of that was a different person that no one ever saw besides her family.  Until one day, she could not hide anymore.  She had to show herself to the world, not knowing how people would react to seeing her in the not so beautiful reality.  This is my story asking people not to judge me until they come to know me and my life. Read more »