Taming the Dragon: Living Happily Ever After with Hereditary Angioedema

As a child, my favorite fairy tale was about a princess who is locked away in a tower and guarded by a terrible dragon. Finally, a prince comes along, slays the dragon, and awakens the princess so they can live happily ever after. That fairy tale gave me hope because I had a dragon in my life, too. My dragon is called hereditary angioedema, or HAE, which is a genetic condition that causes severe swelling beneath the skin.

The HAE dragon first attacked when I was just two years old. Over the years, it would return again and again. I had bouts of excruciating abdominal pain and would often go to the hospital. I also had occasional swelling of my face, hands, and feet.

As I got older, the threat of having an attack haunted every part of my life. A simple, repetitive task, such as using scissors, stirring a pot of soup, holding a pen, or typing on a keyboard, could bring on swelling and trigger an attack.

Dental visits were the worst. Every time I had to get a filling or a root canal, my face would swell up like a balloon. I learned to dread routine appointments and often put off going until it was absolutely necessary.

Fortunately, my family was always there for me. My parents surrounded me with their love as they kept seeking ways to defeat the dragon. Soon, I would have another champion, too: my husband, Umar. In 2010, we married, and for those first two blissful months, I felt like I was in a real-life fairy tale. But then the dragon reared his head.

One evening, I felt a lump in my throat. At first, I ignored it, thinking I was probably just getting a cold. A few minutes passed and the lump began to take over my whole throat. I gasped for air. Umar realized the urgency and rushed me to the hospital.

At that time, I wasn’t diagnosed with HAE, and I never had a throat swelling before, so I was terrified. It was the point when I realized just how serious this condition is. This dragon could take my life.

While I was hospitalized, my doctor ran tests to figure out what caused my throat to swell up. A few weeks later, I had a diagnosis: HAE. Finally, the dragon had a name, and I had a reason for all the terrible attacks.

I was referred to a specialist at a nearby hospital. She was a blessing for me since she was already treating a few patients with HAE and was very familiar with the condition. And best of all, she was familiar with the treatments that were currently available. She started me on an IV therapy, and it was a big improvement, but I had breakthrough attacks. HAE still lurked in the back of my mind and continued to keep me on edge.

When I went for my next checkup, my specialist told me about a preventive therapy called HAEGARDA® (C1 Esterase Inhibitor Subcutaneous [Human]) that’s injected under the skin and can be administered at home. She explained that it replaces the C1-INH protein that’s missing in my 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.

I learned everything I could about the therapy, and we agreed that HAEGARDA was a good option for me. I liked knowing how it worked, and it made me feel empowered to know this therapy would specifically address the root cause of my disease.

Since starting HAEGARDA, the dragon has retreated, and I haven’t had a single attack. It allows me to be more independent, confident, and free because I can take it with me wherever I go and don’t have to depend on anyone.

Umar and I love to travel. Before I started HAEGARDA, I had to find an infusion center near where we planned to stay so I could have my therapy. It was a hassle, to say the least. Now I just take HAEGARDA with me wherever I go. I also carry my emergency medication with me, just in case.

I love that I don’t have to depend on anyone and can be responsible for my own treatment. Being able to manage my symptoms has empowered me to help other people too as I share my story.

Today, the HAE dragon no longer holds me captive. I am free to help other people who have HAE learn about this dragon and find ways to keep it at bay. Thanks to the people who supported me and helped me find treatment, I no longer have to live in fear of HAE.

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.

IMPORTANT SAFETY INFORMATION

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.


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