{"id":279193,"date":"2025-05-27T12:57:10","date_gmt":"2025-05-27T16:57:10","guid":{"rendered":"https:\/\/rarediseases.org\/?p=279193"},"modified":"2025-12-02T16:42:18","modified_gmt":"2025-12-02T21:42:18","slug":"in-memory-of-kate-obara-raising-awareness-for-vascular-eds","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/in-memory-of-kate-obara-raising-awareness-for-vascular-eds\/","title":{"rendered":"In Memory of Kate O\u2019Bara: Raising Awareness for Vascular EDS"},"content":{"rendered":"

By Laura O\u2019Bara for Ehlers-Danlos Syndrome Awareness Month<\/em><\/p>\n

When you asked me to tell you how\u00a0Ehlers-Danlos syndrome<\/a>\u00a0(EDS) type IV affected my daughter Kate\u2019s life, I had to stop and think about when it hadn\u2019t affected her, and I realized I couldn\u2019t 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.<\/p>\n

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).<\/p>\n

In August 2024, Kate\u2019s 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\u00ae) and raised awareness for Ehlers-Danlos syndrome type IV. Nothing was keeping her from raising awareness!<\/p>\n

On Sept. 3, 2024, Kate\u2019s 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\u2019t 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.<\/p>\n

I\u2019m 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 \u2013 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 \u2013 speak up, trust yourself, and be your own strongest advocate!<\/p>\n

Kate O\u2019Bara would have turned 31 years old today. Please join us in honoring Kate\u2019s legacy by taking a moment to learn more about\u00a0vascular Ehlers-Danlos syndrome<\/a>. If you are local to Massachusetts, you can also show your support by participating in upcoming\u00a0ED for EDS4<\/a>\u00a0fundraising events that benefit National Organization for Rare Disorders (NORD):<\/p>\n