Celebrating the 10th anniversary of hae day :-)
Clarion is celebrating the 10th anniversary of the global hereditary angioedema (HAE) awareness event, hae day : – ) on May 16th. HAE is a rare genetic disorder characterized by unpredictable and recurrent swelling to various parts of the body; it can be fatal when the swelling affects the throat due to the risk of suffocation.
“HAE places extraordinary strain on patients, often restricting their ability to lead normal lives”, explains Henrik Balle Boysen, Executive Vice President & Chief Operating Officer of HAE International. “Global awareness initiatives such as the hae day : – ) are necessary in order to help people with HAE receive faster diagnosis and appropriate medical care to manage their disease.”
Facts about HAE diagnosis:
- HAE is a rare disease affecting only 1 in 10,000 to 1 in 50,000 people worldwide 1,2
- HAE causes episodes or attacks of swelling (edema) to various parts of the body, including the hands, feet, face and airway
- HAE can be life threatening in the case of throat/airway swelling
- Swelling in the abdomen/intestinal wall can often result in excruciating abdominal pain, nausea and vomiting 1,3,4
- On average it can take 13 years for a patient to be diagnosed with HAE as the symptoms can be confused with those of many other common conditions such as allergies or appendicitis 5
- By the time HAE is diagnosed correctly, the patient has often seen a number of physicians, may have undergone unnecessary operations, and could have felt a major impact on their quality of life
By acting together, we can help raise awareness and reach goals of improved time to diagnosis, and consistent access to lifesaving therapies for everyone with HAE. Clarion will mark the day by holding an internal forum leveraging our expertise in rare diseases and centering focus on HAE patients; learn more and explore how you can get involved in hae day : – ) by clicking here.
- Agostoni A, Aygoren-Pursun E, Binkley KE, et al. Hereditary and acquired angioedema: problems and progress: proceedings of the third C1 esterase inhibitor deficiency workshop and beyond. J Allergy Clin Immunol 2004; 114(3 Suppl): S51-131
- Bowen T, Cicardi M, Bork K, et al. Hereditary angioedema: a current state-of-the-art review, VII: Canadian Hungarian 2007 International Consensus Algorithm for the Diagnosis, Therapy, and Management of Hereditary Angioedema. Ann Allergy Asthma Immunol 2008; 100(1 Suppl 2): S30-40
- Bork K, Meng G, Staubach P, Hardt J. Hereditary angioedema: new findings concerning symptoms, affected organs, and course. Am J Med 2006; 119: 267-74
- Frank MM, Gelfand JA, Atkinson JP. Hereditary angioedema: the clinical syndrome and its management. Ann Intern Med 1976; 84: 580–93
- Roche O, Blanch A, Caballero T et al. Hereditary angioedema due to C1 inhibitor deficiency: patient registry and approach to the prevalence in Spain. Ann Allergy Asthma Immunol 2005; 94:498–503.