default avatar
Welcome to the site! Login or Signup below.
Logout|My Dashboard

A Proactive Approach To Holidays For People With Chronic Diseases

Font Size:
Default font size
Larger font size

Posted: Friday, November 22, 2013 3:44 am | Updated: 1:33 am, Sat Nov 23, 2013.

(NAPSI)—A house full of guests. Cooking for a crowd. Financial pressures and end-of-year deadlines. For many, the holidays can evoke feelings of stress rather than cheer. For people living with chronic rare diseases like Michelle Hardy, stress may have an even greater impact.

Michelle experienced her first attack of a rare disease called hereditary angioedema (HAE) when she was 17. After having her wisdom teeth removed, the swelling she experienced was far from normal: Her eyes swelled shut and her lips were so swollen she was unrecognizable. Michelle’s doctor didn’t know how to treat the attack, but within a few days, she was back to normal.

At the time, neither Michelle nor her physician knew that she was living with HAE, a rare genetic disorder that causes painful and potentially life-threatening swelling attacks through the body, including arms, legs, face, abdomen and upper airway.

Michelle spent nearly 20 years coping with HAE attacks before she was diagnosed. During this time, she did her best to battle through her symptoms and not let HAE interfere with her life. She also became aware of the importance of stress management and wellness when living with chronic diseases.

“For HAE patients, and for everyone, living a healthy lifestyle means not just treating the symptoms of your disease, but taking a proactive approach to wellness and being an informed patient. For people with genetic disorders, being informed means that they know their family’s history with the disease and have shared that information with their physicians. We can then use that information to develop an effective treatment plan,” said Dr. Mark D. Scarupa of the Institute for Asthma & Allergy, who has been treating HAE patients for over 10 years.

Michelle sometimes felt as though stress management was just another item on an extensive to-do list at a busy time of the year. She found that by living mindfully, she was able to enjoy the holidays and make the most of time with her family. If you have experiences similar to Michelle’s, stress management coach Pamela Cappetta, Ed. D., NCC, recommends the following tactics to manage stress:

• Adjust your perspective: Set your intention daily to be positive and hopeful.

• Identify and understand your personal stressors.

• When you feel yourself getting stressed, stop and take deep breaths.

• Adopt a healthy lifestyle through diet, exercise and good sleeping habits.

• Talk to your doctor if you find yourself overwhelmed by stress.

For families like Michelle’s, the holidays can also provide an opportunity to discuss rare genetic disorders such as HAE. In Michelle’s case, she was able to get diagnosed, after 20 years of mystery, because her sister heard about HAE from a physician friend. By sharing that knowledge, others in Michelle’s family have been able to get an HAE diagnosis sooner. As the case of Michelle and her family demonstrates, discussing rare genetic disorders can bring previously unknown information to light and help family members in understanding their disease.

“Once I received my diagnosis, I took control of my life,” Michelle said. “I became an expert in my hereditary angioedema tailored treatment, understanding its genetic origins in my family, and how to apply stress management and wellness tactics to provide myself the opportunity to lead a healthy lifestyle even with this disorder.”

Today, Michelle knows that stress management is an important part of maintaining her general well-being. She considers herself lucky that in addition to her supportive family and friends, she was able to find an organization dedicated to advocating for people living with HAE, the US Hereditary Angioedema Association (US HAEA, www.haea.org). Her challenging path to diagnosis also inspired her to become 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.

On the Net:North American Precis Syndicate, Inc.(NAPSI)

Rules of Conduct

  • 1 Use your real name. You must register with your full first and last name before you can comment. (And don't pretend you're someone else.)
  • 2 Keep it clean. Please avoid obscene, vulgar, lewd, racist or sexually oriented language.
  • 3 Don't threaten. Threats of harming another person will not be tolerated.
  • 4 Be truthful. Don't lie about anyone or anything. Don't post unsubstantiated allegations, rumors or gossip that could harm the reputation of a person, company or organization.
  • 5 Be nice. No racism, sexism or any sort of -ism that is degrading to another person.
  • 6 Stay on topic. Make sure your comments are about the story. Don't insult each other.
  • 7 Tell us if the discussion is getting out of hand. Use the 'Report' link on each comment to let us know of abusive posts.
  • 8 Share what you know, and ask about what you don't.

Welcome to the discussion.


Should graduations return to the Grape Bowl?

Lodi Unified leaders are moving Lodi and Tokay high school graduations from the Grape Bowl to the Spanos Center at UOP in Stockton. They cite limited seating, costs and unpredictable weather at the Grape Bowl. But others say graduations at the Grape Bowl are an important Lodi tradition, and one reason many supported renovating the stadium. What do you think?

Total Votes: 37


Mailing List

Subscribe to a mailing list to have daily news sent directly to your inbox.

  • Breaking News

    Would you like to receive breaking news alerts? Sign up now!

  • News Updates

    Would you like to receive our daily news headlines? Sign up now!

  • Sports Updates

    Would you like to receive our daily sports headlines? Sign up now!

Manage Your Lists