How those with a rare disease can stand up to intolerance
by ARA
Nov 06, 2012 | 44812 views | 0 0 comments | 421 421 recommendations | email to a friend | print
How those with a rare disease can stand up to intolerance

(BPT) - Whether verbal or physical, bullying can cause real suffering for its victim and can ultimately interfere with a person’s social and emotional development. A common target for bullying and intolerance are those people with qualities that may set them apart from their peers, such as health-related issues.

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.

Share This Free article |
report abuse...

Express yourself:

We're glad to give readers a forum to express their points of view on issues important to this community. That forum is the “Letters to the Editor.” Letters to the editor may be submitted directly to The Times-Independent through this link and will be published in the print edition of the newspaper. All letters must be the original work of the letter writer – form letters will not be accepted. All letters must include the actual first and last name of the letter writer, the writer’s address, city and state and telephone number. Anonymous letters will not be accepted.

Letters may not exceed 400 words in length, must be regarding issues of general interest to the community, and may not include personal attacks, offensive language, ethnic or racial slurs, or attacks on personal or religious beliefs. Letters should focus on a single issue. Letters that proselytize or focus on theological debates will not be published. During political campaigns, The Times-Independent will not publish letters supporting or opposing any local candidate. Thank you letters are generally not accepted for publication unless the letter has a public purpose. Thank you letters dealing with private matters that compliment or complain about a business or individual will not be published. Nor will letters listing the names of individuals and/or businesses that supported a cause or event. Thank you letters about good Samaritan acts will be considered at the discretion of the newspaper.