Chronic Illness Isn’t Always Easy to Spot

Sep 19, 2019 | Patient Blog

Many times, chronic illnesses aren’t the easiest to spot. Life-threatening illnesses can be invisible to the common eye, but for the patient, they’re dangerous, burdensome, and painful. Amee Ireland, a Hereditary Angioedema (HAE) patient, is one of these people.

“I have a chronic illness that is generally not visible to you,” Amee said. “It can be incredibly painful and scary.”

HAE is a disease that causes swelling in recurring episodes; it affects different parts of the body, and in Amee’s case, causes finger, lip, tongue, facial, genital, and brain swelling. It can also cause swelling in the throat, which is potentially fatal.

Amee and her son have both had near-death experiences from asphyxiation due to HAE. According to Amee, she’s cheated death six times. Her son’s larynx and posterior pharynx were both swollen during his episode, meaning he almost suffocated.

Intensive swelling also causes Amee’s abdomen to increase its girth by over 10 inches in minutes, and sometimes during her past episodes, she won’t remember going to the hospital, sleeping for days. She recently had an episode where she gained 6.4 pounds in five days and grew seven inches in her stomach.

While HAE has no cure, there is medication to help tremendously. However, this medicine is pricy — $80,000 a month, in fact. Additionally, rescue medication is $10,000 per dose. 

“I’ve cheated death on six occasions to date, been wrongly diagnosed on numerous occasions, and treated terribly by my peers (healthcare professionals) for things I cannot control,” Amee said. “I’m grateful to a very small handful of people who cared enough about me to further investigate and actually figure out what causes my life-threatening episodes and get me on the path to appropriate management of my condition. I’m also grateful to have support from Patient Services, Inc., a fantastic non-profit organization that helps patients with expensive chronic conditions.”

Amee encourages others to “speak up” when those with HAE don’t seem like themselves. Signs such as a change in behavior, severe fatigue, and lack of hunger and thirst can preemptively inform others an episode may occur.

She also encourages others to donate blood, as some of her HAE medication requires blood from healthy donors. Prayer, she says, is also another way to help HAE or chronically-ill patients without donating.

“I’m grateful to be alive, and I’m grateful that my son got the necessary treatment which saved his life, too,” Amee said. “Although we have Hereditary Angioedema, it does not define us, nor will we let it rule our lives!”

Click here to watch more of Amee’s story in video format.

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