(NAPSI)—Joanna Boyd was 19 years old when she experienced her first hereditary angioedema (HAE) attack. One morning, after a week of a strange and uncomfortable feeling in her throat, she woke with a sharp pain in her abdomen that grew worse throughout the day. It was more pain than she’d felt in her entire life.
Over the next 12 years, Joanna continued to experience attacks that she eventually learned were due to HAE, a rare genetic condition which causes painful, unpredictable and potentially life-threatening swelling attacks throughout her body, including her arms, legs, face, abdomen and upper airway. She came from a very active family, so despite these scary experiences and despite not knowing the cause of her attacks, she was determined not to let her illness get in her way. She explored alternative foods and sought a healthy lifestyle to face challenges. When the changes she made appeared to dramatically reduce the number of attacks, she got on with her life. She continued to run races and participate in outdoor activities. She also earned her bachelor’s degree, traveled and got married.
Often, people like Joanna who live with chronic or recurrent conditions—such as HAE, asthma, arthritis and diabetes—modify their lifestyles because of the possibility that symptoms will appear at an inopportune time, causing embarrassment or, worse, risk their health due to a lack of access to urgent medical care. In the case of HAE, this may mean experiencing a life-threatening attack far from a hospital or doctor.
“Living with a chronic condition like HAE can make people feel scared and helpless, but these days, there are more options than ever. If you have a chronic illness, with the help of a doctor, you can develop a treatment plan,” said Dr. Jonathan Bernstein, Professor of Clinical Medicine at the University of Cincinnati School of Medicine in Cincinnati, Ohio, and Director of Clinical Research, Division of Immunology.
Because HAE is a rare condition, it took Joanna 12 years to receive an accurate diagnosis. Once her condition had a name, she began by researching the disease and found a thriving community, including an organization dedicated to advocating for people living with HAE, the US Hereditary Angioedema Association (www.haea.org). With the guidance of her physician, she found ways to manage her disease.
“Since being diagnosed and finding a treatment plan to help manage my HAE attacks, one of the realizations I’ve come to is that my journey with HAE is a lot like the trails I like to run and hike,” Joanna said. “Sitting down and giving up gets me nowhere.”
Joanna is passionate about encouraging HAE patients to take a proactive role in their health. That’s why she became a Patient Ambassador for Shire (www.shire.com), a pharmaceutical company focused on rare diseases like HAE, to help raise awareness about HAE and the support available.
If you have a chronic or recurrent illness, a few important steps can put you on the right path to managing your condition:
• Get an accurate diagnosis.
• Work with your doctor to develop a treatment plan that’s right for you.
• Get involved in a patient community or advocacy group for support and to learn how others cope with your condition.
• Tailor your activity to your needs and health.
“HAE patients have lives to lead,” Joanna said. “For ourselves, for our families, and for the communities and societies we belong to.”