Meet Landen: Redefining Life with HAE

The patient featured in this blog post was compensated by Ionis Pharmaceuticals for their time and participation.

Living with hereditary angioedema (HAE) has shaped nearly every part of who I am. It’s not just something I’ve dealt with physically. It has influenced my family, my choices, my mindset, and even the path I’m on today. For much of my life, HAE felt like something hanging over me constantly. Unpredictable, exhausting, and impossible to fully escape.

My journey with HAE started when I was about 10 years old. I remember waking up one morning, getting ready for school like any other day, and looking in the mirror. My face was completely swollen; my eye was shut, my lip was distorted, and I barely recognized myself. As a kid, it was terrifying. I remember thinking, “What is happening to me?” and feeling completely helpless.

HAE wasn’t entirely new in my family, though. I inherited it from my dad. Alongside his father and his siblings, he had lived with it for decades without knowing what it was. He went from doctor to doctor across the Southeast, trying to find answers, but nobody could give him a diagnosis. He eventually became discouraged and stopped searching for help. It had simply become a part of life – suffering through attacks, missing out on things, and accepting that no one seemed to have answers.

When my first attack happened, it reignited that search for answers. Eventually, with the help of a specialist, both my dad and I were diagnosed. That moment changed everything for us. I didn’t fully understand it at the time, but looking back, having access to a diagnosis and the possibility of treatment meant the world to my family, especially after my dad had spent more than 30 years suffering without answers.

Even with a diagnosis, though, HAE took hold of my life in a major way. The condition is unpredictable. Attacks can happen at any time, and for me sometimes triggered by things as small as a bump, illness, stress, or even certain medications. Other times, they just happen with no clear reason at all.

Growing up, I had to think about HAE constantly. I couldn’t go far from home without my rescue medication. I would even keep extra doses at friends’ houses just in case. Simple things like traveling, spending the night somewhere, or going on trips required careful planning. My life was structured around the possibility of an attack.

The disease also forced me to give up things I loved. I played football in high school but eventually had to quit because my body just couldn’t handle it. After practices, something would always be swollen whether it was my hands, my back, or even my airway. It became too much to manage. Physical activity, even walking too much, could trigger swelling.

College was one of the hardest periods of my life living with HAE. I was juggling school and everyday responsibilities while struggling to stay consistent with preventive treatments that felt time-consuming and difficult to maintain. As a result, I experienced frequent, severe attacks. I missed classes, traveled long distances to access treatment, and lived with frequent swelling and near-constant pain. Looking back, it was the most difficult chapter of managing my HAE.

HAE didn’t just affect me physically; it impacted my confidence and how I saw myself. As a kid, visible swelling made me self-conscious and contributed to being picked on. It was just another thing that made me feel different. But at the same time, I decided early on that I wasn’t going to let this disease define me.

For me, it felt like everything changed when my doctor prescribed DAWNZERA™ (donidalorsen).

DAWNZERA™ (donidalorsen) is a prescription medicine used to prevent hereditary angioedema (HAE) attacks in adults and children 12 years of age and older. It is not known if DAWNZERA is safe and effective in children under 12 years of age.

My doctor told me about a preventive treatment that only needed to be taken every four weeks. At first, I couldn’t believe how HAE treatments have evolved, and the idea of something more manageable for me almost seemed too good to be true.

When I started it, I saw results right away. I went four weeks without a single attack, which was the longest stretch I had ever experienced and something I never thought would be possible.

It’s really important for people to remember that medications may work differently for each person, and most medicines have side effects. My doctor was very upfront about the side effects of DAWNZERA. It is important to speak with your own doctor to figure out what is right for you.

DAWNZERA can cause serious side effects including allergic reactions. Allergic reactions can include rash, trouble breathing, chest pain, fainting, dizziness, feeling lightheaded, swelling of the face, lips or tongue, and itching. If these happen to you, stop using DAWNZERA and call your healthcare provider or get emergency help right away if you have any of these symptoms

Now, I don’t feel like I have to plan every detail of my life around this disease. I feel like I can travel with more confidence, spend time with people, and just live without constantly worrying about what might happen next.

It’s not just me who feels the difference–my family does, too. My fiancée, who watched me go through countless attacks over the years, has seen firsthand how much things have changed. My parents, who spent decades dealing with this alongside my dad, feel that relief as well.

What’s even more meaningful is that my dad has now started the same treatment and is experiencing similar results. After all those years of struggling, seeing him finally get relief has been incredibly powerful and emotional for both of us.

My experience with HAE has shaped my future in ways I never expected. It’s a big reason why I’ve chosen to study medicine at the University of Mississippi starting in August 2026. Watching what my family went through—and then seeing what the right doctor and the right treatment could do—made me realize the impact healthcare can have on people’s lives.

I want to be that doctor for someone else someday. I want to be the person who gives a family answers, relief, and hope the way my doctor did for us.

I also see the importance of community. For a long time, I didn’t know anyone outside my family who had HAE. It can feel isolating. That’s why I believe it’s so important to connect people who are going through similar experiences. I want them to share, learn, and support each other.

When I look at my journey, I see both sides of HAE. On one hand, it’s a difficult, unpredictable condition that has caused a lot of pain. But on the other hand, it has shaped who I am, given me perspective, and led me to opportunities I might not have had otherwise.

Today, thanks to DAWNZERA, I’m in a place I never thought I’d reach. It has allowed me to control HAE better, and for the first time in my life, I can honestly say that sometimes I forget I even have HAE.

IMPORTANT SAFETY INFORMATION & INDICATION

INDICATION

DAWNZERA™ (donidalorsen) is a prescription medicine used to prevent hereditary angioedema (HAE) attacks in adults and children 12 years of age and older.

It is not known if DAWNZERA is safe and effective in children under 12 years of age.

IMPORTANT SAFETY INFORMATION

Do not use DAWNZERA if you have had a serious allergic reaction, including anaphylaxis to donidalorsen or any of the ingredients in DAWNZERA.

Before using DAWNZERA, tell your healthcare provider about all of your medical conditions, including if you: are pregnant or plan to become pregnant, are breastfeeding or plan to breastfeed. It is not known if DAWNZERA can harm your unborn baby, or if it passes into your breast milk and if it can harm your baby.

Tell your healthcare provider about all the medicines you take, including prescription and over- the-counter medicines, vitamins, and herbal supplements.

What are the possible side effects of DAWNZERA?
DAWNZERA can cause serious side effects including allergic reactions. Allergic reactions can include rash, trouble breathing, chest pain, fainting, dizziness, feeling lightheaded, swelling of the face, lips or tongue, and itching. Stop using DAWNZERA and call your healthcare provider or get emergency help right away if you have any of these symptoms.

The most common side effects of DAWNZERA include injection site reactions (such as redness or pain at the injection site), upper respiratory tract infection, urinary tract infection, abdominal discomfort.

These are not all the possible side effects of DAWNZERA. Tell your healthcare provider or treatment team about any side effects you may have.

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

Please see full Prescribing Information and Patient Information for DAWNZERA, also available at DAWNZERA.com.

DAWNZERA™ is a trademark of Ionis Pharmaceuticals, Inc. All other trademarks are the property of their respective owners. ©2026 Ionis Pharmaceuticals, Inc.

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The US HAEA is product and company neutral and does not endorse or recommend HAE medicines.

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