Sunday, June 4, 2023
Home / Power Stories / Katie’s Story (Ehlers-Danlos Syndrome)

Katie’s Story (Ehlers-Danlos Syndrome)

Katie's Story (EDS)  In January of 2010  I was diagnosed with Ehlers Danlos Syndrome after a discouraging and difficult 10 year journey to finally NAME all my strange symptoms.

Since then I’ve been trying to find balance; I am a middle school special education teacher, a wife, a mother, a Christian, a friend, and so much more. So how do I do any of those things well when I can hardly see sometimes off and on throughout the day because of the glares/blind spots/visual aura I get from the vascular symptoms of my EDS. I get migraines that incapacitate me. I dislocate joints running the dishwasher. I nearly pass out when I stand up. My heart races and my temperature is at fever-level because my body can’t regulate it. I’m exhausted. I’m tired. And I’m discouraged.

But I am thankful.

Thankful? Really?

Here’s what I realized:

I have 4 loads of laundry to fold because I have clothes.

My house is a mess because my boys have toys.

My kitchen is a disaster because we have food to eat and dishes to eat on.

I’m exhausted because I have a job to go to and the ability to provide for my family.

I’m sore because I have time to play with my kids.

My porch is cluttered because we have so many fun things to use outside.

My car is full of random items because we have 2 reliable vehicles to get us around.

I have bills to pay because I have money to spend on Netflix and the internet and I got a college education.

I had to have surgery because I got to have kids.

I fight for covers because I have an amazing husband lying beside me.

I don’t know where to spend holidays because I have so many relatives that want my time.

My schedule is full because I am much loved.

Every struggle, every discouragement is so wrapped up in blessings that I really can’t distinguish one from the other. I just have to open my eyes to it.

Perhaps I need to open my eyes more often.

So yes, I am thankful.

Submitted 5-1-11

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

Check Also

Maia’s Story (Multiple Diagnoses – 10 Year Update)

My name is Maia, and this is the first time I have wanted to write …


  1. Toni

    Thank you for your story, Katie. I have been diagnosed (and had surgery for) Chiari Malformation, which often goes hand-in-hand with EDS but I have not yet been tested for EDS. I forget all the different types but I have symptoms consistent with one of them (including hypermobile joints, tachycardia, and trouble regulating body temperature). It’s lovely to hear from someone who manages to live a full life on a daily basis despite your challenges with EDS. I admire your strength, your courage, and your fight.

  2. Rosemarie

    Thanks for sharing your story. I am getting tested soon for Vascular EDS. This post was encouraging. I’m Christian and I know i’m not alone. I have 3 young children to keep me busy also – Godbless. xox

Leave a Reply

Your email address will not be published. Required fields are marked *