HOUSTON (KTRK) --A brother and sister team are cycling across the country to raise awareness about a disorder that potentially affects millions of people but isn't known by many doctors.
"Because some of the physicians are not aware of this diagnosis, this disease has been misdiagnosed with a lot of things," said Memorial Hermann Pediatric Cardiologist Mohammed Numan.
It's called POTS or Postural Orthostatic Tachycardia Syndrome. The disorder causes the nervous system, among other things, to restrict blood flow to the heart and brain, causeing many who suffer from the disorder to become dizzy, lightheaded, fatigued and have an increased heart rate when standing. Medical experts say the disorder is mostly genetic that's triggered by a the flu or other viral infections or illnesses.
"I was lightheaded. I was tired. I was dizzy. I was drinking gallons of water, but I was still thirsty," said Ari Diaconis, a New York attorney who was diagnosed with POTS last year. "There were questions as to whether this was all in my head. And it was mostly a constant search, and a bit of panic."
Diaconis said after his diagnosis, he began researching the disorder. He said he found a lot of misinformation. Diaconis said he decided with his sister to cycle from Florida to California to raise awareness about the disorder and raise money for research. The journey will take them more than 3,000 miles to complete. Along the way so far, Diaconis said he's met other cyclists who are on a similar journey, cycling for different causes. During his stop in Houston, he said there's one thing he's learned along the way that has set him free.
"Accepting that this is likely a chronic permanent state, and accepting that medications as they currently exist are not going to do the job to restore me to normalcy," said Diaconis.
POTS can cause those who are affected by it to lose muscle strength since many people have to stay sitting or in bed for extended periods of time. Cycling is a sport that Diaconis said he is able to enjoy. Experts say cardiovascular workouts help those affected by POTS. Doctors in Houston are treating the disorder using anti-gravity workout therapy.