May 13, 2025 Our Diagnosis with vEDS
To provide a complete picture of our journey, we have to go back to 2010 when my daughter, Rey lost her father to a spontaneous aortic dissection. He passed away at the age of 34 years old, when Rey was only 10 months old. He had received emergency care at the Mayo and the results to the autopsy came back inconclusive but that he might have a connective tissue disorder. I tried to have her genetically tested, but access was significantly more challenging back then, so we opted to have her care managed by cardiology, where it was discovered, that her right pulmonary artery was slightly dilated. The doctors didn’t understand why, so they elected to monitor her every couple of years, which we did for several years.
Back in August of 2024, my daughter was complaining that she was getting dizzy often at track and field practice. I thought that she might be dealing with dehydration or a little anxiety post COVID or acclimating to a less sedentary life (post COVID). She had also been dealing with frequent, daily headaches, so I thought it might be prudent to have her evaluated again, so we went back to cardiology, where they discovered that she also has trivial mitral valve leakage in both of her valves. She was also diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) and hypotension. The cardiologist recommended that we try the genetic testing again and on May 13, 2025, I received a phone call from the geneticist that my daughter has vEDS. I won’t go into detail about my frustration with how this message was delivered other than to say that I was advised to “google” her condition and come back with questions.
The very first thing that I read was that the median life expectancy of someone living with vEDS was 51 years old and that my daughter has the most severe subtype of vEDS. Additionally, 25% of people with vEDS will have their first major severe medical complication by age 20, by age 30, that number climbs to 70% and by 40 years old, that number is 80%. Even as I write this over a year later, it still brings me to my knees.
We have had her grandmother tested as well, now that we understand through research, that it’s highly likely her father passed of this same condition. in July, 2025, Grandma also came back positive. However, she has a less severe, mosaic mutation, which means only some of her cells were affected and so she has been able to live a full life without many of the issues her granddaughter is managing now.
2025 was arguably one of the most challenging years of my life. Navigating her diagnosis, reliving and grieving the loss of my partner, her father, and figuring out how to move forward wasn’t easy. R had just been accepted to do a study abroad in Spain and with her strength and determination, she still wanted to go. Me having to let her choose her path and learn as much as I could about her condition and how to best support her from afar and find all the right resources for her in Spain was incredibly hard as a mother. All I wanted to do was protect her and all I could do was let her soar and set up the right emergency care options to keep her safe as I possibly could. I found a vEDS resource abroad and was able to locate the right hospitals. She ended up in the Emergency Department twice when she was abroad.
As of September, 2026, we have visited the Emergency Department 8 times. We are learning her body and what is normal and what requires additional evaluation. It has not been easy, but we are stronger for it.
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