Six Hours in the ER and a Near-Death Experience for a 46-Year-Old Patient with an Ultra-Rare Disease Card

A 46-year-old woman suffering from thrombotic thrombocytopenic purpura spent six hours ignored in a Warsaw emergency room despite holding an ultra-rare disease medical alert card.

Neglect at the Emergency Room

Even with a patient card confirming an ultra-rare congenital or acquired thrombotic thrombocytopenic purpura, individuals can wait hours in an emergency room because triage medical staff fail to listen to patients or their families. The symptoms of the condition are atypical and mimic a stroke or heart attack, leading to misdiagnoses in emergency settings.

Katarzyna Lisowska, a patient advocate for hemato-oncology, reported that a close friend carrying the ultra-rare disease patient card spent six hours at a Warsaw hospital emergency room. The cards were issued specifically to prevent such patients from dying in emergency rooms, as they explicitly state the need for immediate medical assistance and provide direct contact numbers for specialized centers. Unfortunately, the staff dismissed the card, and the patient is currently fighting for her life.

Understanding Thrombotic Thrombocytopenic Purpura

Congenital thrombotic thrombocytopenic purpura is an ultra-rare genetic blood disorder caused by the absence or malfunction of the ADAMTS13 enzyme, which leads to small blood clots in vessels, platelet destruction, and organ damage. The condition is life-threatening and requires constant medical supervision.

When the disease flares up, patients must undergo plasmapheresis, a procedure where blood is drawn, plasma is separated, and disease-causing proteins, toxins, or antibodies are removed before the remaining blood cells are returned to the body. Due to the severity of these symptoms, which mirror strokes and heart attacks, delayed treatment can lead to fatal microclots in the brain and heart.

The Significance of the Ultra-Rare Disease Card

The patient card was developed in cooperation with hematological patient organizations by Prof. Dr. hab. n. med. Grzegorz Basak, a specialist in hematology, clinical transplantology, and internal medicine who heads the relevant clinic at the University Clinical Center of the Medical University of Warsaw.

In the case of the 46-year-old patient, it was only after a doctor finally arrived, called the emergency contact number listed on the card, and realized immediate plasmapheresis was required that proper intervention began. The patient was placed into a medically induced coma and has since woken up, though she suffers from memory gaps regarding her time in the emergency room.