Taking Charge of Your HAE Treatment to Help the Next Generation

HAE is not my story. But it’s definitely part of my story.

Looking back, I realize that my late childhood and early teen years held some occasional, unexplained swelling events that were uncomfortable for me and just plain scary for my parents. Moving into my late teens, these scattered, inconsistent events progressed into a much more common theme.

My early adult years included a wealth of indescribable abdominal pain, uncontrolled vomiting, repeated hospitalizations, dozens of GI doctor visits, virtually every test known to the gastrointestinal medical specialty, many thousands of dollars spent on medical care, and days and days of missed work. My wife was really scared.

After our son was born, we were motivated to finally figure out my condition. We were scared that I wouldn’t survive to see him grow up, and a new chapter of my story began. I again subjected myself to medical test after test. Still, there were no results to explain my health issues.

Finally, in 1999, I found myself in the small office of a local rheumatologist. After three minutes listening to me describe my symptoms and frustrations, he abruptly excused himself. He returned about five minutes later carrying a thick, heavy medical textbook. Pointing to a brief paragraph on a rare condition called hereditary angioedema (HAE), with confidence, he said, “This is what you have.”

He referred me to a specialist in Dallas, where a simple blood test confirmed that HAE had indeed been the culprit of my misery all along. It was amazing to finally uncover the cause of all these medical problems.

We discussed the known triggers of an HAE attack, most of which I’d already figured out on my own. We talked about how stress can trigger an attack and, of course, the life-threatening risks of a throat swell.

In the years that followed my diagnosis, I expected and experienced at least one attack every seven to ten days, affecting different parts of my body from head to toe, and on many occasions even compromising my airway. By this point, my wife and I had two children, our son and daughter, Kyla. I was determined to win this battle so I could be there for my children as they grew up.

Thankfully, living within an hour of a leading HAE researcher allowed me to participate in several clinical trials over the years. My motivation for participating in trials has been threefold (and sometimes, admittedly, selfish):

  1. Personal access to treatment
  2. To help the HAE patient community at large
  3. And, perhaps most importantly to me personally, to help provide Kyla with a better way to manage her HAE.

Yeah, she has it, too. Kyla was diagnosed around the age of seven. Of course, we didn’t want her to go through the horrible things I did. So we quickly agreed, “We’re going to put her on medication.”

Fortunately, treating our HAE has become a reality. Some years ago, there was a very long-awaited, sudden flurry of medications hitting the market. Together with my doctor, my wife and I determined what we believed to be the best treatment strategy available to us at the time.

And then several years later, I was blessed to be part of the trial that helped bring HAEGARDA® (C1 Esterase Inhibitor Subcutaneous [Human]) to market. I did have a single breakthrough attack in the early stage of the trial, but it’s been quite a while since I’ve had an attack. Of course, this has been my experience, and everyone is different.

In clinical studies, the most common side effects reported with HAEGARDA were injection-site reactions (pain, redness, swelling); hypersensitivity (itching and rash), dizziness, and nasal symptoms, including stuffy or runny nose and sneezing. These are not the only side effects possible with HAEGARDA. Tell your healthcare provider about any side effect that bothers you or does not go away.

 I simply can’t describe how freeing it’s been to live without swollen extremities, without the constant worry of an absurdly painful stomach attack or a swollen airway. Of course, I always carry my rescue meds with me just in case. I feel that HAEGARDA offers the potential for a different story for HAE patients like me…

Patients like my daughter, who is now 15 and also using HAEGARDA.

Every year, our church youth group goes on a cross-country choir and camp trip. Kyla has gone each year that she’s been old enough to attend, but she was never able to go without her mom or me. We needed to be there just in case there was a throat swell so we could treat her with IV rescue meds.

But this past summer, for the first time in her life, we felt comfortable allowing her to go on that trip without us. She still had her rescue meds, but we felt confident that we didn’t personally need to be there to administer them. We also had a plan in place in case there was an emergency and informed the chaperones what would need to be done if there was an incident.

Probably my biggest adjustment with HAEGARDA was just getting used to taking a regular injection twice a week. But the fact that it’s injected under the skin rather than into a vein, and convenient for me to administer, was a big draw, and that made the small adjustments worthwhile.

Today, I’m grateful for the availability of safe, effective therapies for me and my daughter. I now have hope that she’ll never know the miseries that were a routine part of my younger years.

 Today, I can confidently say that HAE is not my story. It’s just part of my story—a part that no longer gets to write the story.

 Acknowledgment: This story is sponsored by CSL Behring and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted and valuable information to the rare disease community.


 A healthcare professional can teach you to self-administer HAEGARDA® for prophylaxis. Do not use HAEGARDA to treat an acute HAE attack once it starts; work with your physician to plan for attacks if they occur.

Do not use HAEGARDA if you have previously experienced life-threatening immediate hypersensitivity reactions, such as shock, to HAEGARDA or other C1-INH products.

Immediately report any symptoms of allergic reactions to HAEGARDA, including hives, chest tightness, wheezing, difficulty breathing, turning blue, faintness, facial swelling and fast heartbeat.

Before starting HAEGARDA, tell your healthcare provider about all medical conditions you have—including pregnancy or nursing; a history of heart disease or stroke; an indwelling catheter/access device in a vein; or immobilization for a sustained period. Also tell your physician about any other medications you are taking, as some medications, such as birth control pills and certain androgens, can increase risk of clotting problems. High doses of C1-INH have been known to increase the risk of blood clots.

Immediately report to your physician or an emergency room if you have any of the following symptoms of a blood clot: pain or swelling of arm or leg, with warmth or discoloration over the affected area; unexplained shortness of breath; chest pain or discomfort that worsens on deep breathing; rapid pulse; and numbness or weakness on one side of the body.

In clinical studies, the most common side effects reported with HAEGARDA were injection-site reactions (pain, redness, swelling); hypersensitivity (itching and rash), dizziness, and nasal symptoms, including stuffy or runny nose and sneezing. These are not the only side effects possible with HAEGARDA. Tell your healthcare provider about any side effect that bothers you or does not go away.

Because HAEGARDA is made from human blood, the risk that it may transmit infectious agents, including viruses and theoretically, the agents of Creutzfeldt-Jakob Disease (CJD) and its variant form (vCJD), cannot be completely eliminated.

HAEGARDA, C1 Esterase Inhibitor Subcutaneous (Human), is an injectable medicine used to prevent swelling and/or painful attacks in adults and adolescents with hereditary angioedema (HAE).

Please see full prescribing information for HAEGARDA, including the patient product information.

 You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

You can also report side effects to CSL Behring’s Pharmacovigilance Department at 1-866-915-6958.

PW Collaborator

PW Collaborator

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