Medical Alert Cards for Porphyria Patients

Treating porphyria depends on the severity of symptoms and whether the disease is acute or cutaneous. However, physicians may not be familiar enough with the disorder to respond adequately in a medical emergency. Medical alert cards can be of paramount importance in such instances.

What is porphyria?

Porphyria refers to a group of disorders in which porphyrins — molecules the body normally uses to make hemoglobin — accumulate instead. Hemoglobin is the protein that binds oxygen in red blood cells.

Treatment in an emergency

Acute porphyria can be life-threatening if an attack isn’t promptly treated. During an attack, patients may experience dehydration, breathing problems, seizures, and high blood pressure. Such episodes often require hospitalization. Doctors usually treat acute porphyria with sugar (glucose) and heme infusions to slow the body’s production of porphyrins.

Symptoms of cutaneous porphyria include pain-causing sensitivity to the sun, sudden painful skin redness and swelling, blisters on exposed skin, fragile thin skin, itching, red or brown urine, and excessive hair growth in affected areas. Treatment focuses on reducing exposure to triggers such as sunlight, and drawing blood to reduce porphyrin levels in the body. Sometimes, doctors may prescribe malaria medications to absorb excess porphyrins.

What are medical alert cards?

It may not always be easy to explain what is happening or what emergency treatment you need during a porphyria attack. Moreover, because the disease affects fewer than 200,000 people in the U.S., physicians may not be familiar with it. They may also not be able to understand what is going on during a porphyria attack if they lack early and easy access to a patient’s medical history.

Some signs and symptoms of acute porphyria, including abdominal pain, nausea and vomiting, urination problems, and heart palpitations, are also similar to those of more common conditions. This can make it difficult to know if patients are having a porphyria attack.

Medical alert cards can, for these reasons, potentially save lives. There are various versions of medical alert cards, which you should carry with you at all times. All typically contain personal information, such as your name and birth date, emergency contacts, notification of any allergies, and the name of your primary physician.

They also summarize what porphyria is and alert health professionals that you may be having a porphyria attack. The emergency ID card also tells professionals what actions they need to take.

You may want to print your medical alert card in other languages for use when traveling abroad.

Last updated: Oct. 13, 2020