The parts nobody else sees
Marfan syndrome is quiet work: a yearly echocardiogram you wait on, a blood pressure you keep down to protect your aorta, the lifting and sports you turn down, and a back and joints that ache for no new reason. Healya is built by people who know what that load feels like.
Most people with Marfan syndrome have an echocardiogram every year to measure the aorta.
Keeping your blood pressure down matters more than for most people, because it eases the strain on the aorta.
Back and joint pain are common, and many people also see an eye doctor every year.
Your numbers already tell a story
Healya connects your home blood pressure, resting heart rate, back pain score, sleep, your medicine doses and what changed that day so the story is visible, to you and to your cardiologist.
The top (systolic) number of your home readings in mmHg, averaged each week over twelve weeks, with the week you became news director marked. It sat between 115 and 118 through the summer, around 116, then climbed every week from there, from 120 that week to 134 now. Your latest reading, 134/84 on your blood pressure card, is the thing to show your cardiologist rather than explain from memory.
Your resting heart rate in beats per minute, averaged each week over the same twelve weeks, with the week you became news director marked. It stayed between 59 and 61 the whole time, 60 now, which is worth showing: the top number climbed on a steady pulse, not on a racing one.
Your back pain score, 0 to 10, averaged each month over eight months as bars and as a line, with your last visit with Dr. Okoro marked. It moved between 3 and 5 the whole time, 4 now, the way it has for years, and it did not climb with the top number, which is worth a line in the summary rather than a guess at the visit.
A new diagnosis, an aorta that has held steady for years, or a repair behind you: your blood pressure is data, and Healya can track it.
How Healya helps with Marfan syndrome
A blood pressure record that reads as one line
A thirty-second check-in with your home reading, resting heart rate, pain score and the medicine taken, so twelve weeks of the top number sit on one timeline you and your cardiologist can read instead of a memory of the worst morning.
Readings next to what changed
Work, stress, sleep, exercise and what changed that day, logged next to each reading, so a climb has a record behind it and a cause stays a question until you and your cardiologist have read the record together.
Your watch on the same timeline
Resting heart rate from your watch, when one is connected, next to the readings you log, so a steady pulse under a climbing pressure shows up as one picture. No wearable is required.
A summary your cardiologist can scan
A year of home readings, heart rate, pain scores, sleep and your medicine doses on one page, with the questions worth asking before the echocardiogram. Fifteen-minute visits go further when the story is already organized.
No wearable required. A thirty-second daily check-in is enough.
Reports written for Marfan syndrome
Three kinds, each built from your own record. A summary before every cardiology visit. A report on how your months are actually going. And a plain-language digest of new Marfan syndrome research, on a schedule you choose.
Questions people with Marfan syndrome ask us
Clear answers about what Healya does with your data, and what stays between you and your care team.
Bring your story together
Your home blood pressure, resting heart rate, back pain and sleep in one place before your next cardiology visit. Free for a week, no card required.