By Laura O’Bara for Ehlers-Danlos Syndrome Awareness Month
When you asked me to tell you how Ehlers-Danlos syndrome (EDS) type IV affected my daughter Kate’s life, I had to stop and think about when it hadn’t affected her, and I realized I couldn’t think of a time. She was born with a club foot and had intestinal problems and migraines, and she bruised with the lightest of touches. The biggest struggle was seeing so many doctors and them telling her that it was all in her head. She was only 13 at the time.
Kate graduated high school in 2013 at the age of 19, and a month later, her colon spontaneously ruptured. Right after that, Kate got her diagnosis of Ehlers-Danlos syndrome type IV (vascular).
In August 2024, Kate’s lung collapsed. She was in the hospital for about a week. Four days after she was released, she was at our first Ed for EDS4 Golf Tournament benefiting the National Organization for Rare Disorders (NORD®) and raised awareness for Ehlers-Danlos syndrome type IV. Nothing was keeping her from raising awareness!
On Sept. 3, 2024, Kate’s lung collapsed again, and this time she needed surgery to repair it. A few days later, she had a small rupture on the front of her heart. Her clinical team ran all kinds of tests and determined that surgery wasn’t needed, and it would heal on its own. On Monday, Sept. 9, she got the news she was going home on Tuesday. Tragically, that evening around 5:30 p.m., Kate had another rupture, and she did not survive.
I’m sharing this story in the hope that it helps others understand some of the challenges faced by people with all types of EDS. To the clinicians out there – I urge you to truly listen to your patients. They know their bodies better than anyone else. And to those living with any rare disease – speak up, trust yourself, and be your own strongest advocate!
Kate O’Bara would have turned 31 years old today. Please join us in honoring Kate’s legacy by taking a moment to learn more about vascular Ehlers-Danlos syndrome. If you are local to Massachusetts, you can also show your support by participating in upcoming ED for EDS4 fundraising events that benefit National Organization for Rare Disorders (NORD):
- 1st Annual Corn Hole Tournament on June 7, 2025, at Charlton Beagle Club. There will be live music, a pig roast, and games/prizes! Entry fee is $50 per player or $25 per adult for food only.
- 2nd Annual Golf Tournament on August 24, 2025, at Heritage Golf Course in Charlton, Mass. Shotgun start at 8 a.m.! Golf entry includes 1 meal per golfer, 18 holes of golf, and a golf cart.
To sign up for either event, please contact Laura O’Bara at email [email protected]
Left to right – Kate O’Bara, Tiffany Bacon (Kate’s cousin), NORD’s Darby Gavin, Laura O’Bara (Kate’s Mom and blog author). Photo was taken at the first annual ED for EDS4 Golf Tournament on August 24, 2024. Kate passed away only 16 days later on Sept. 9, 2024.
Thank you to Laura for sharing her and Kate’s story. To support their efforts, you can donate to the Fundraising for NORD by ED for EDS4 campaign here: https://donate.rarediseases.org/campaign/fundraising-for-nord-by-ed-for-eds4/c690908