Treating POTS: A Teenage Syndrome Solution

Vivien Williams: There's no way Katie Luckraft could have gone to cheering practice when she was sick.

Katie Luckraft: I would want to stay home on the weekends and not to go to my cheering competitions.

Vivien Williams: Over two years, Katie missed 100 days of school.

Katie Luckraft: I would wake up in the morning and be like I don't think I can make it today. I'm just going to stay in bed.

Vivien Williams: On the days she did go to school. It was tough to make it through the day.

Terri Luckraft: She was dizzy and she'd faint all the time. She would have hot and cold sweats, her heartbeat would be racing.

Elizabeth Luckraft: It was really hard to watch my sister because I didn't know what she was going through.

Katie Luckraft: One of my doctors described it as walking wounded. I look fine, but I'm not fine inside.

Terri Luckraft: A lot of people pushed me and ... she's depressed, or your daughter's just going through something.

Vivien Williams: Katie's mom, Terri, knew her daughter was not just 'going through something.' Her search for help took them to Mayo Clinic where a multidisciplinary team of experts led by pediatrician Dr. Philip Fischer cared for Katie.

Philip Fischer, M.D. — Mayo Clinic pediatrician: POTS. Postural Orthostatic Tachycardia Syndrome. To us physicians, it's a problem of the involuntary autonomic nervous system not regulating the flow of blood very well. To patients, it's misery.

Vivien Williams: Diagnosing POTS can be tricky. Doctors look for symptoms like Katie's plus there's one other obvious clue. Increased heart rate when you stand up from a resting position. You see, your heart pumps blood to the brain when it beats. If there's a sudden and dramatic increase in pulse rate, not enough blood gets to the brain and you get dizzy. So the increase in pulse and dizziness upon standing are key for diagnosis.

Philip Fischer, M.D.: Most important for physicians and nurse practitioners is to listen and understand them, to realize this is a real problem. These kids are not making it up; it's not all in their heads. They're not crazy.

Vivien Williams: As Katie learned, many people and even doctors still don't understand that POTS exists. It was first identified in the 1990's, but it's been around long before that.

Philip Fischer, M.D.: The history of POTS is quite fascinating, and I would say it grew parallel to the history of the Mayo Clinic.

Vivien Williams: In the early days, Dr. William Worrall Mayo examined young men enlisting in the Civil War. Some of them had trouble with fainting and dizziness, which disqualified them from service. It's referred to as Civil War Syndrome.

Philip Fischer, M.D.: And some just said, 'Oh they're just scared, they have anxieties, they're scared of being in the military.' But as we look back, we can see very similar descriptions of Civil War Syndrome with chronic fatigue and dizziness and nausea to what we now recognize as POTS.

Vivien Williams: Lee Aase, the Director of Mayo Clinic's Center for Social Media has worked with Dr. Fischer to increase awareness of POTS.

Mom on video chat: She's been living in pain for almost 9 months.

Vivien Williams: He found an opportunity to use social media to help teens with POTS get exactly the treatment they need.

Lee Aase — Director, Mayo Clinic Center for Social Media: The thing about social media is you can get connections with other people who've had the same condition. You can also make the expertise of physicians like Dr. Fischer available as a resource for people who are looking for information, and who are desperately searching for information.

Vivien Williams: People like this mom of a teen with POTS, who saw a Mayo Clinic video about it on the internet. She then contacted Lee who connected her with Dr. Fischer. Lee then helped that family spread the word about POTS via Mayo Clinic's sharing Mayo Clinic blog and YouTube channel.

Lee Aase: Dr. Fischer's still says that this has played a role in an awful lot of patients coming to see him.

Vivien Williams: Recovery from POTS takes time, sometimes years. Treatment includes drinking lots of water and eating salty foods to bolster blood vessels, some medications and exercise. With help, almost all kids with POTS will get better.

Philip Fischer, M.D.: Now for about 15 years, we've been able to recognize it in teenagers, diagnose it and provide treatment so people like Katie can get better and do well in life.

Katie Luckraft: Before I let my symptoms run my life. Now, I'm driving the bus to my life.

Dec. 17, 2014