Our Ehlers-Danlos Article - Published!

Ok ladies and gentlemen - drum roll please!!! Here is the article that appeared on the FRONT PAGE of our local paper, complete with two awesome pictures of my daughter! I am so excited about this - yippee! The only complaint I have is that they subtitled it a disease, which it isn't, but other than that is a great article for the general public. :) Now, because this blog is so personal and does mention cities and other personal information, I have to edit out a few identifying items in the article. You know, our real names, city, that kind of thing. I hope you understand!

By L. Jacobs
(Mom's name)'s 7-year-old daughter looks like any other healthy child her age, and that, (Mom) said, is part of what makes it hard for others to understand Bug's Ehlers-Danlos Syndrome.

"Ehlers-Danlos syndrome is a hereditary connective tissue disorder, and it affects the collagen in your body, so you basically have faulty collagen, " (Mom) explained. "That means not only does it affect the skin and the joints, it also can affect your lungs and your stomach, and your GI tract, your heart, basically pretty much anything inside of you."

The most common form of EDS affects around one in 10,000 to one in 15,000 people, according to MayoClinic.com.

Bug was diagnosed at age 5.

"She was in kindergarten and (name) was her teacher. She noticed that she was having problems with some fine motor skills, and the thing that really set off the alarm was that she couldn't open a water bottle even though the cap wasn't on tight," (Mom) said.

After meeting with the Area Education Agency's occupational therapist and her doctor, Bug was referred to a connective tissue specialist for diagnosis.

Since that time, Bug has worn ring splints to provide stability for her fingers.

"Her fingers without them basically flip straight back, so it makes pinching really difficult for her - picking things up. " (Mom) said. "They have been a Godsend. They make the biggest difference, and she wants to wear them because she knows they help."

Until this year, Bug wore 10 plastic splints around the top joints of her fingers. She now has a silver set dolled up by (name), a jewelry designers and friend of (Mom)'s, who added pink and purple beads to the bracelets holding the thumb splints in place.

But mostly, (Mom) said, "It's all about preserving her body for the future. The more careful we are now, we're hoping the least amount of pain she'll have as she gets older, which is hard because second-graders want to play and be active. "

"It's just a constant struggle. What is OK and what isn't?"

Cans she do a jumping jack in gym class, jump on a friends trampoline or go to a roller-skating party?

Those are the questions (Mom) and her husband (name) have to ask themselves and answer for teachers and friends.

"We're all learning as we go because it's not something anyone [here] has really dealt with before," (Mom ) said. "We're blessed in a lot of ways that the schools here are so small because being at (school name) and finding out in kindergarten, we have a very close relationship with everybody there, and they're all on the same page. "

(Mom) said a lot of time has gone into making arrangements at school.

"She doesn't necessarily have the stamina that the other students have, but her cognitive capabilities are the same, so we've spent the last couple of years trying to find ways for her to have the same cognitive stimulation and same output as the other students, which is difficult when your hands are constantly fatiguing," (Mom) explained.

Right now, Bug is experimenting through the University of Iowa with assisted voice technology as a potential tool to help her through third grade next school year.

Through it all though, Bug remains "an amazingly positive and caring little girl, " (Mom) said.

"So many awesome people have touched our lives," she said. "I don't think Bug would be as well-adjusted and as happy without them."


Girl, Dislocated said...

Great interview!! I hope the article has reinforced the consideration you're giving to doing more of this advocacy stuff, because you're great at it!

BugsMom said...


It actually makes me want to do more! Local paper today - tomorrow, the world! haha

Testy Tiger said...

Fabulous article! I'm so glad the Bug was able to get a diagnosis and the care she needs at a young age. You seem like such a great advocate for your little girl! I was just only diagnoses last month and I am 25. I went years not knowing what was wrong with me and thought of as a hypochondriac. I hope this article opens the eyes of those who don't understand.

Rich Driscoll said...

Congratulations on getting your article published. The EDS community needs more good publicity. The more doctors and the community learn about it the better. Are you going to the EDNF conference in Houston?