ORLANDO, Fla. — This last week of February marks Rare Disease Day. This day aims to raise awareness of rare diseases and improve access to treatment.
For four years, now 27-year-old Tayler Tennant was living with excruciating abdomen pain, vomiting every time she ate, and was constantly out of breath.
“It was one of those things where I started to feel like I was going crazy,” Tennant said.
After 26 surgeries and countless doctor appointments and tests, Tennant was finally diagnosed with Median Arcuate Ligament Syndrome, or MALS.
“My celiac artery was being compressed by my diaphragm,” Tennant said.
According to the Journal of Vascular Surgery only two out of 100,000 patients have MALS.
Dr. Joseph Ibrahim at OrlandoHealth said he sees on average two patients per week with symptoms similar to Tennant’s.
“Nobody knows what I have, I’m very frustrated, this is taking over my life, I never feel good,” Dr. Ibrahim said.
Dr. Ibrahim was able to treat Tennant by performing a nerve-blocking procedure and then surgery to prevent her celiac artery from being crushed.
“I could immediately breathe again, I was able to eat food and keeping all of it down,” Tennant said.
He hopes bringing awareness to this disease encourages other doctors to think outside of the box when treating patients.
“We get so homed in on our specialties and typical things that sometimes these more rare things get missed and unfortunately a patient goes undiagnosed for years,” Dr. Ibrahim said.
It was a lifesaving diagnosis for Tennant who is now advocating for other patients with rare diseases.
“There is a light at the end of the tunnel,” Tennant said. “Holding out hope is the best thing anyone can do.”
Rare Disease Day is recognized on the last day in February. This year it is on the 28th but during a leap year it is on the 29th which is also the rarest day.
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