Medical Alert Cards for Porphyria Patients

Medical Alert Cards for Porphyria Patients
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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

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Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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