Local Man Battles Rare Disorder That Causes Violent Swelling Attacks

12:18 PM, Sep 28, 2012   |    comments
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WASHINGTON, DC (WUSA) -- Imagine living life every day, knowing that at any time, your world can literally transform.

70 year old David Lund of Capitol Hill knows this all too well.  Certain triggers like stress, fatigue, and sudden movement can cause his body to expand.  Much like the Marvel character "The Incredible Hulk", except this is not incredible at all.

David Lund says, "The disease will kill, it has a 20 percent fatality rate if it's undiagnosed."

David suffers from Hereditary Angioedema, or HAE for short.  This is a relatively rare genetic disorder that is caused by the lack of a crucial protein in the body.  This causes uncontrollable swelling, particularly on the face and in the airways, which can be very dangerous.  Experts are still trying to figure out exactly what triggers this condition.

Mark Scarupa, MD of The Institute For Allergy and Asthma says, "We don't really know, stress clearly causes symptoms, trauma does."

"It's very rare.  It's estimated at the most 1 in 10,000, realistically 1 in 60 (thousand) to 1 in 70,000. 

The swelling is extremely painful, for years this condition was not understood and went misdiagnosed.  It led to unnecessary procedures including hysterectomies and appendectomies.  David was diagnosed in the 1970s, when HAE was newly identified.  Now, there are several treatments to control the swelling attacks.

Dr. Scarupa says, "There's four medications that have been FDA approved for hereditary angioedema and Firazyr is a medicine used for an acute attack.  If you have swelling, you take it and there's an expectation that your swelling decreases over a course of minutes or over the course of hours."

With that treatment, David can enjoy his travels and sail in the Chesapeake Bay, without too much worry of another episode.

For those who have swelling attacks and want to check to see if they have this disorder, they are strongly urged to contact HAEA, the US Hereditary Angioedema Association

Note: The swelling attacks do not cause acts of rage.  This is a very dangerous condition that is deadly.  The "Incredible Hulk" comparison refers to the swelling attacks.

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