For someone who has the rare disease hereditary angioedema (HAE), unpredictable attacks of swelling can be life-threatening. Going to the emergency room seems like the obvious solution, but that, too, has a complication. ER doctors often don’t know about HAE or how to treat attacks of swelling that could affect critical body functions, including breathing.
The patient advocacy group HAE International (HAEi) took on this problem on behalf of patients around the world and created an emergency card for patients in 29 languages. The cards clearly explain what HAE is and steer doctors toward the most effective treatment during an attack. Patients can add additional information, such as their doctor’s name and emergency contacts. HAE advocacy organizations around the world are using and promoting the card, which slips easily into a wallet or purse.
“HAE is a rare disease and, as a result, peoples’ knowledge about it can be limited,” said Fiona Wardman, HAEi Treasurer and Chief Regional Patient Advocate. “As advocates, we are always happy to spread awareness of HAE and educate people about the condition. The emergency cards allow us to do exactly that at critical times during an attack, when it is most important. The emergency card concisely delivers patient-specific, key points of information about the disease and correct treatments, which could turn out to be life-saving.”
The U.S. Hereditary Angioedema Association also recognizes this information gap and created an ER Toolkit to raise awareness in the general public and medical community. People who live with HAE are missing or have low levels of a protein called C1 esterase inhibitor (C1-INH). Or, the protein may be present but not functioning properly.
Depending on the severity of the disease, some people with HAE will have many attacks each month, while others will go months without an attack. The HAE community recently celebrated the 40th anniversary of the scientific discovery that led to a treatment.
HAEi, with operational headquarters in Denmark, is a global nonprofit network of patient associations, including the U.S. HAEA. It has 83 member countries and its mission is to raise awareness about C1 inhibitor deficiencies. The global group describes prevalence of HAE as still unknown, but estimates it affects between one in 10,000 and one in 50,000 people. Around the world, they say approximately 250,000 people have the disease.
“It was important for us to develop a resource for HAE patients around the world and that’s why we continue to work with our regional patient advocate network and their contacts to translate the emergency card into as many languages as we can,” Wardman said. “We are delighted to share this resource with the global HAE patient population and will continue to strive to support them as much as we can.”