New Hope For Suffers Of Rare Disease - NewsOn6.com - Tulsa, OK - News, Weather, Video and Sports - KOTV.com |

New Hope For Suffers Of Rare Disease

Updated:
There’s new hope for people with a rare disease. News on 6 anchor Terry Hood explains how breakthrough research is happening in Tulsa.

The disease is called hereditary angioedema; it's spontaneous swelling caused by a genetic deficiency.

Emma DeLaCruz has suffered from H.A.E since she was 6-years old. Her face, hands and stomach would swell for seemingly no reason. Doctors didn't have any answers, some even recommended surgeries that couldn't provide relief.

Emma finally found Tulsa doctor David Hurewitz. A blood test showed she was missing a protein inhibitor.

Standard treatments haven't worked for Emma. She's now part of a drug trial, testing a new injection to stop the swelling.

"Oh, it gets awful. Times I'm in bed two and three days without being able to get up. I have days I'm in bed my family has to get me out to go to the bathroom. I can't function by myself," said Emma DeLaCruz.

"Dental or surgical procedures can provoke it. Emotional stress, physical trauma like someone falling or being tackled playing football, weather changes, infection, hormones, a variety of factors tend to provoke the event," said Dr. David Hurewitz.

The drugs being tested are prescribed in Europe, but it will take more patients like Emma before they're approved by the FDA.

H.A.E sufferers have a 50-50 shot of passing it onto their children, Emma's 16-year old son also has the disease.
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