How those with a rare disease can stand up to intolerance

For the 30 million people in the United States living with a rare disease, standing out can often subject them to increased intolerance over time. Thirty-six year old Dennis is living with a rare swelling disease called hereditary angioedema (HAE) and knows firsthand the affect intolerance can have on a person.

The rare disease journey Dennis would take began at age five when he was diagnosed with HAE after experiencing swelling attacks in his hands, feet and face. HAE is a genetic disease that affects about 6,000 people in the United States. The disease causes repeated swelling attacks that can occur anywhere in the body, including arms, legs, hands, feet, stomach, genitals, face or throat. HAE attacks can be unpredictable, painful, debilitating and disfiguring.

Attacks of the face can render a person unrecognizable and can be extremely embarrassing, and attacks of the hands and feet can make everyday activities like walking, driving or even fastening a button difficult, or even impossible. Many patients with HAE also live in constant fear of a swelling attack in the tongue or throat, which could be fatal if the airway closes.

When Dennis was first diagnosed with HAE, a commonly used treatment for HAE in the United States was an anabolic steroid that can be associated with a host of physical side effects. Because of these side effects, Dennis physically developed faster than most of his peers and, as a result, he became the victim of bullying at the early age of seven. The stress of bullying caused his attacks to worsen. When Dennis was 12, his doctor increased the dosage of his medication, causing his body to change physically for the worst.

“I dealt with a lot of bullying and people ostracizing me because of the way I looked – they didn’t know what was wrong with me,” says Dennis. “I was the butt of everyone’s jokes to the point that in the eighth grade I was given the nickname Chunky.”

Eventually, Dennis found himself not only struggling with his unpredictable and often debilitating swelling attacks, but battling depression as well. When Dennis graduated from college and entered the workforce, his swelling attacks became even more severe, causing him to miss work as often as every other week. His boss was unsympathetic and gave Dennis an extremely difficult time, leading Dennis to leave his job in the hope of new opportunities.

Despite all the adversities and hurdles Dennis faced over the years because of his HAE, he was able to persevere due to his strong character, resilience and positive attitude. He faced challenges head on and is now happily married and employed. His swelling attacks are also better managed and controlled thanks to treatments for HAE that were approved by the FDA in the last five years.

As a result of the hardships Dennis has faced throughout his life, he feels a sense of responsibility to share his story. Here are his tips on overcoming intolerance.

Be true to yourself

Don’t let what people say about you define you as a person or prevent you from achieving your dreams. Accept yourself for who you are and what you are capable of doing.

Find support

Surround yourself with positive people who love and support you no matter what. Find true friends that you can rely on when things get tough.

Educate intolerant people

Don’t be afraid to stand up for yourself and educate those around you who don’t understand the illness or disease you’re living with. Ask your doctor to write a letter about your condition to share with your school or employer, or share your story with others in the community. Contact a patient/advocacy group, such as the U.S. Hereditary Angioedema Association (HAEA) (www.HAEA.org) who can provide you with resources to help explain your condition to others. To learn more about HAE, including how HAE impacts people living with the disease, visit www.HAEandMe.com, an online community for people with HAE, their friends and family members.