A woman who has diagnosed with a heart condition as a baby was stunned to learn she has already lived past her life expectancy – twice.
Dakota Rogers-Merkley, 19, from Nebraska, US, was diagnosed with dysautonomia at just a few months old.
The condition is caused by problem with the autonomic nervous system, which controls body functions including heartbeat, breathing and digestion.
For Dakota, it has meant passing out on numerous occasions, leading to “tons” of hospital visits and even surgery after she “shattered” her face as a result on one occasion.
As a child, she claims doctors told her family she would “grow out of it” – but the condition has followed her into adulthood.
It has plagued her in recent months, with Dakota cutting back on social activities and giving up strenuous activity including running as it affects her too much.
Her boyfriend Tyler, 20, searched the condition online in a bid to help her – and was shocked when he found the average life expectancy for those with dysautonomia is just 5-10 years after diagnosis.
Dakota was left “heartbroken” by the news, but has now decided to treat every day as a “gift”.
“I was first diagnosed with a heart condition as a baby, but my grandmother and parents were told I’d grow out of it as I got older,” Dakota, a teacher, told Jam Press.
“I did not and I had very bad episodes and was re-diagnosed in January 2019.
“It definitely does [affect my daily life]. My heart causes me to pass out since it will stop and I have shattered my face and had to have surgery.
“[I’ve had] tons of hospital visits. I think my biggest challenge is that it comes on out of nowhere. I never know when it’s going to happen so the way I’ve adapted sadly is to avoid a lot of strenuous activity I used to enjoy, like running.
“I’ve cut back on social stuff because it affects me multiple times a week.
“Tyler has taken me to the hospital on multiple occasions, he’s held me as I was having the episodes to make sure I did not hurt myself, he’s driven me places and taken days off work because I sometimes have an episode or two in the mornings and he wants me to be safe.
“So many people have told me that dysautonomia is something I can work through and that I might have the mild kind… I just know the cold hard facts on Google – which is terrifying.
“I try to live like every day is my last and be kind to people. I want to go out more so if something were to happen, I would go without any regrets.”
She shared the shocking story on TikTok in a post which garnered 224,000 views and 39,000 likes.
One user commented: “Ugh I couldn’t imagine this pain and you have every right to grieve how you see fit. I hope that your life is filled with happiness and great times.”
“My gramps has dysautonomia and is still kickin it at 72. It’s hard but that’s why the strongest soldiers have it,” said another viewer. [sic]
Someone else commented: “Sending you sm love girly. You already beat the odds my love, just keep pushing and living best you can (and ofc doctors appointments to keep winning).” [sic]
“A lot of conditions that once had a low survival rate are very quickly being extending and treatments are getting much better,” added another person.
Another user said: “Same girly. I ask my husband everyday why he’s with someone who will die before he does.. I just don’t understand why he’d wanna feel that heartbreak.”
