I Just Want To Be Well For My Son-A Mother’s Story

I just want to be well for my son. A Mother’s Story

I don’t even know what healthy is!

But my son needs a strong and healthy mom.

I’m a 27 year old disabled mom with a rare syndrome called Ehlers Danlos Syndrome type 3- Hypermobility.  It’s a multi-systemic disorder, meaning it effects, in severe cases like mine, almost every single body system.  It’s caused by a defect(s) in connective tissue.  Collagen is mainly effected, which the body contains about 85% of!

I remember the pain started around the age of 7.  It was nerve pain from carpal tunnel and tarsal tunnel syndrome which was the worst!  I was told I was being a baby about it and that it was just growing pains (I am quite short, only 4″11.5″.”)  It was joint pain daily as well, with some muscle pain.

I also had panic attacks from all the pain, it was so overwhelming, I couldn’t sleep and got gastrointestinal migraines.

Read more »

A 26 Year Old Spoonie Shares Her Story (Part 2)

To view the beginning of this Spoonie story click here.

20 years of failed allergy injections are also now behind me; new allergies were diagnosed, but I was able to stop my injections.

I actually feel better OFF the injections than I did when I had them.

Go figure! Despite increased medical costs in this state, moving to Florida was the best decision I have ever made.

As far as my diagnoses go, I have quite a few.

Read more »

One Family’s Journey To An E.D.S. Diagnosis

One Family’s Journey to An E.D.S. Diagnosis

EDS is known to cause frequent dislocations of the joints. I remember hearing that my first dislocation had happened when I was three, but the stories about how it happened vary.  I found this slip of paper from a hospital showing that something had happened to my elbow when I was only 1.5 years old that warranted an X-ray.  So, it seems I may have dislocated that elbow twice.  I became a fairly careful child and haven’t had any documented dislocations since then.

Read more »

Laura’s Journey With E.D.S.

My name is Laura, and I’m 32 years old.  I’ve had chronic pain since I was 14. I’m an artist, and I love to make stuff… but sometimes I struggle because of my hands.  This is my story.

I have I a connective tissue disorder called Ehlers Danlos Syndrome.

It affects how my body produces collagen, which is basically the glue that holds our body together.

Read more »

The Early Years- “When EDS Was Still Fun”

Hi!  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?

Read more »

Transportation And Mobility Ideas For Your Child

Transportation and Mobility Ideas For Your Child

Part 7 in the Helping Your EDS Child Series

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 »

How To Help Your EDS Child At Home (Part-6)

How To Help Your EDS Child (Part 6)

These are just a few ideas to help make schoolwork a little less painful at home.

If you have any other ideas or suggestions please leave them in the comment section below or e-mail them to TheZippyZebra@outlook.com. Read more »