A young American testifies to the severe symptoms of her rare disease, such as tachycardia, and the significant impact on the quality of life they cause.
- Postural orthostatic tachycardia syndrome is one of the most common disorders of the autonomic nervous system.
- Currently, there is no treatment.
Not being able to stand for more than three minutes without fainting and having to spend 23 hours a day in bed… Such is the trying daily life of Lyndsi Johnson, a 28-year-old American from Maine in the United States.
Rare pathology
Suffering from postural orthostatic tachycardia syndrome (STOP), a rare pathology, she suffers from various very disabling symptoms when she goes from lying down to standing up: vomiting, headaches, cold sweats, dizziness, extreme fatigue… Her heartbeat also quickens, to a dangerous level.
In the DailyMirror, she recounts her ordeal and medical wandering until a cardiologist made the diagnosis 7 years after the first signs of the chronic disease appeared in 2015, which doctors had until then attributed to anxiety .
“I passed out everywhere and up to 10 times a day – at the supermarket or at the gym. I vomited so much that my heart began to tire so I was often hospitalized under cardiac monitoring. It was really scary“, she says.
No curative treatment
The young woman is now on beta-blockers, drugs that reduce her fainting to three times a day and relieve her nausea. If they are part of the solutions to relieve the disorder, they do not however allow to cure it.
Researchers from Newcastle University, who have studied postural orthostatic tachycardia syndrome, have indeed concluded that there is insufficient knowledge of this syndrome and the absence of a management and treatment protocol.
Published in the BMJ Open, their study conducted among 136 people with STOP, finds that the majority of patients are young, well-educated women with significant and debilitating symptoms that have a significant impact on quality of life.