More than statistics, more than long boring scientific facts, it’s the stories of how Ehlers-Danlos syndrome affects “real” people that matter more than anything.  Whether they are facing life-threatening aneurysms, or living life in daily, unending pain – these men, women, and children have one thing in common; they are all FIGHTERS. 

As much as I hope and intend to put out useful information for readers trying to figure out this confusing world of EDS, my desire to make known the stories of the people involved is ten times greater. 

They are the “why” to the “what” that we as families do everyday.  They are the reason any of us are on the web looking for information or support in the first place.  Theirs are the smiles we crave and the tears we dry, the fears we try to calm when nothing is going “right”. 

I’ve been deeply touched and humbled by the stories of the people I’ve met in the last year – with all types of EDS.  Their strength and perserverance have motivated me – their love and understanding has guided me through some of the most difficult months of my life and if I spent the rest of my life writing I couldn’t begin to do justice to their struggles and triumphs. 

I can however, use what time I have to share their lives and their struggles with you – with as many people as I can. Their stories will encourage you, inspire you, and occasionally enrage you.  

They will undoubtedly move you.

Thank you in advance for taking the time to get to know some of my heroes; please share their stories with your family and friends – let their struggles be used for the good of spreading awareness and education about this devastating disease and let their optimism and fighting spirit be reminders to us all how precious and how fragile this gift of life really is.


Introducing Jeremy

At the ripe old age of seven, Jeremy has learned some hard lessons many adults will never even face.  Diagnosed with the Kyphoscoliosis type of EDS, he was born with scoliosis and many other physical challenges.  His dad has written an honest account of all they’ve faced and weathered as a family.  I’ve posted his story because I’m certain that you’ll find it incredibly moving and will be deeply impressed by the spirit of this brave little man. 

Thank you Joe & Jeremy for sharing so openly all that you’ve been through!!

For Jeremy, nothing was “normal” from the beginning. The pregnancy went along with the baby never moving or kicking. The local hospital wouldn’t do any ultrasounds at all although we requested them. They said, “It’s kicking, you’re just not feeling it?” So I knew something was wrong right from the start. I have two adult children; but this was Jeremy’s mother’s first pregnancy. The pregnancy went to full term.

The day he was born, Jeremy was breached so they were forced to do a C-section. When he came out he wasn’t breathing for a couple of minutes and he was folded in half with his feet next to each ear. He also had the middle fingers on both hands held down by his thumbs and his hands wouldn’t open. He wouldn’t suckle or latch on to feed. The day after he was born he was put in ICU and hooked up to I.V.’s to give him fluids etc… until he began eating on his own. He was in the hospital a few extra days for all of that. 

Pictures of Jeremy

Jeremy through the years

He was released to come home with a leg / hip brace because they said he had hip dysphasia. His back was curved already from birth; he was so soft and squishy. He was like picking up a wet sponge. I knew from my previous children that this wasn’t right.

Jeremy progressed slowly with things as he grew. He was tested for all the proper DNA etc… But nothing was found to be wrong with him, obviously there was.

The Dr’s chose to ignore his problems and said he was just a “little floppy.”

So we pushed to take him to some specialists. He was initially diagnosed with a condition called Nemaline Myopathy, which has similar traits, but the skin frailty and bruising was puzzling as he got older.

Jeremy didn’t roll over until his first birthday. He was walking long before he could crawl. But his walking was very scary and he fell a lot. It would always worry me when he fell because you couldn’t just pick him up like a “normal” child. You had to be very careful and lift him from his ribcage, not his arms or shoulders, and even then it felt like you were picking up a wet sponge and trying not to squeeze the water out. That’s the best description I can give for how it felt to pick him up.

Then he fell and broke his right femur from a fall that wasn’t even hard enough to leave a bruise. So six weeks in a Hip Spika cast and he was back walking again.

But six weeks later he fell again and broke the same femur. Then Children’s services were called in to investigate abuse.

Luckily Jeremy is a very advanced and smart child and could tell them just exactly what happened.

It was that incident that got the Dr’s looking at a connective tissue disorder instead of a neuromuscular disorder. He saw Dr. Marcia Willing at the University of Iowa. She walked into the room on his first visit looked at him for 2 seconds and said “he has EDS go pee in this cup” a little over a week later we had the diagnosis Type VI or Kyphoscoliosis EDS, confirmed. So after 3 years of struggling to find out what was wrong we finally had a diagnosis.

Jeremy today

Jeremy after back surgery

Now, four years later, we still know very little about his condition. He is dealing with the paper-thin skin and the tearing of his skin quite well. He knows his limits pretty well. I carry steri-strips and several sizes of bandages in my car, in my wallet and at both of my businesses. Because you never know when he will fall and peel all of the skin off of his knees or his elbows.

He tells his friends when he plays, “You can’t do that to me, my skin is like paper.”

He wears braces on both ankles and a vest for his back. He had a spinal fusion with a rod put in, in Aug of 09. He grew 5 inches from that surgery. He is the bravest little guy ever. He just wants to be normal and be able to play with his friends.

For his 7th birthday I asked him what he wanted more than anything for his birthday. He said “to be out of this brace forever”

It’s the little things we all take for granted.  That really hits home with him. He still can’t dress himself and do many things a “normal” 7 year old can do. Jeremy is very smart, just his body fails him in a big way.


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2 Responses to “Stories”

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Oh wow, that is heartbreaking. And it helps us to be grateful for the blessings that we take for granted (like not wearing a back brace or having a rod in our backs). It’s always hard to deal with a child with EDS, but poor little Jeremy has been through more than most. Wish I could hug that little guy!

I re posted your article on this ER room, are you prepared. I found your link at the bottom. I am an aorticdissection survivor and have been almost 6 years now! I started my website, and to help others-similar to what you are doing.

I will be posting some additional information on the
Ehlers-Danlos Syndrome in a few minutes.

Brian Tinsley 🙂

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