My mother was our rock, the center of our family. She was strong and determined to live to 100. A thoracic aortic dissection due to EDS took that hope from her. She was mistakenly diagnosed with pneumonia; it was seven days before the doctors found out exactly what she had, and by then it was too late. We transferred her to U of M hospital, but the head surgeon declined her surgery; and after being on life support for three days, she passed away. We didn’t know she had EDS until a year before she died, after my doctor diagnosed me. She didn’t want to believe she might have it because her doctor never said so. After she passed, because my children showing signs of Vascular EDS I started to research EDS. I found that my mother might have been living with this most deadly type of EDS.
Since then, I and six of my children have been suffering with symptoms of vEDS. We are having an extremely hard time getting the correct medical attention we all deserve. When I look back, my mother had every sign of vEDS but her doctor of more than 30 years had never heard of it. In her memory, I am determined to get the word out to as many health facilities and professionals as I can so this doesn’t happen to another family. I miss my mother and I believe she would have still been here if more education on EDS reached the medical community. I hope her death was not in vain and her story can help another family.
—Kim Brown
