One Rare Diagnosis, Countless Silent Battles: A Family’s Fight Against HAE

May 16th, HAE awareness day, It’s not just a date on the calendar—it’s a day that lives in my bones.

HAE stands for Hereditary Angioedema, a rare genetic condition that causes painful, unpredictable swelling in various parts of the body—including the face, throat, and abdomen. It can be disfiguring, disabling, and in some cases, fatal. There is no cure. There are only treatments.

According to HAE Canada:

• HAE (Hereditary Angioedema) affects about 1 in 50,000 people.

• It is a rare, potentially life-threatening genetic disorder that causes severe swelling in different parts of the body—commonly the limbs, face, intestinal tract, and airway.

• Swelling can occur without warning, often triggered by stress, illness, trauma, or even dental work.

• It is often misdiagnosed as allergies, gastrointestinal issues, or anxiety because of how unpredictable and different it looks for everyone.

• There are three types of HAE: Types I, II, and HAE with normal C1-inhibitor (formerly known as Type III). I have the HAE C1-normal form.

  
  

HAE is rare. It is serious. It’s hereditary (50/50 chance) And it deserves more awareness.

So please take 10-15 minutes today and listen to our stories… One family caught in the storm.

I’ve sat silent for the last seven years.- By Stacy Farquhar

I’ve sat silent for the last seven years. Tucked behind ER curtains. Behind swollen lips and bloated skin. Behind fake smiles and “I’m fine” replies. I stayed quiet, because how do you explain a disease people can’t always see or pronounce?

But not anymore.

It’s time to be seen.

It’s time to get loud.

Loud for my mom, who still thinks it’s just another flu or a twisted ankle.

Loud for my sister, watching her own children suffer and feeling helpless.

Loud for my daughter, whose tiny arms require seven painful attempts just to find a vein for her medication.

Loud for my other sister, who feels guilty for having immediate access to better medication or being in remission.

If sharing this reaches one person, just one, then my mission is accomplished. 

That’s how a movement starts. One story at a time.

Mine began with fear.I thought I was the only one. I felt so alone. My body betrayed me in ways I couldn’t explain. I looked in the mirror and didn’t recognize myself. I cried in bathrooms and curled up on floors. I feared for my life more times than I can count. My throat would swell shut without warning. My body would balloon overnight. I fell asleep at night, not knowing if I would wake the next morning. And people around me? They didn’t know what to say or do. So they just… hoped it would go away.

I get it. Sometimes it’s easier not to think about the hard stuff. It’s easier to tell yourself it’s just stress or bad luck or “your body’s being weird again.” I did that too. Until I couldn’t anymore.

It wasn’t until I was finally diagnosed (after two exhausting years of endless testing, countless specialists, and a desperate cry for help on Facebook) that things finally started to make sense. My symptoms weren’t "normal." The answer came: HAE. Hereditary. Once that diagnosis was in place, it felt like the floodgates opened. Suddenly, I could see the signs all around me: my daughter, my mother, my siblings. Their symptoms hadn’t been as persistent back then, but they were there, quietly hiding in plain sight. What once felt like a series of unexplained mysteries finally started to reveal the truth.

And that’s the thing with HAE: it shows up differently for everyone. It’s unpredictable. What barely affects one person can completely debilitate another. It can be silent for years… and then change your life overnight. You don’t get a warning. You just get hit. HARD.

This disease is sneaky. And if you’re not aware, it can take your life in the blink of an eye.

I started treatment with Berinert C1 esterase. I learned how to give myself IVs at home, over 500 of them. I blew every vein I had. Eventually, I had two chest ports surgically placed so I could administer the medication that was saving my life… even though it didn’t feel like living.

I was surviving—but barely.

That’s when I entered a medical trial. A big leap, a big risk, and the best decision I’ve ever made. It changed everything. I finally experienced what it was like to live without fear. Without constant swelling. Without hospital bags packed at the door. That medication, Takzhyro, gave me my life back. I was on top of the world. 

And yet… cue the guilt.

The medication that changed my life? It’s currently unavailable in Canada for patients like me with HAE C1-normal. I have it. My daughter doesn’t. That truth guts me every single day. It’s one of those things I try not to think about because I can’t fix it. Not yet.

But I can do something.

I can get loud.I can share my story.I can stand up and say, “This isn’t okay.”And I can help create change, not just for me, but for every Canadian living with this rare, misunderstood disease.

So on this HAE Awareness Day, I’m asking you to see us. Hear our stories. Take 10 minutes to understand the weight we carry in silence. Know that this is real. And know that spreading awareness saves lives.

This is the beginning of something bigger.

A movement of stories, shared in truth, unedited and raw.

Because awareness isn’t a once-a-year post. It’s every day. Every conversation. Every time someone says, “You don’t look sick.”

So this is me. Showing up. Making noise.For my daughter. For my mom. For my nieces. For my sisters. For my HAE friends. For every person still undiagnosed and scared.

We’re done sitting in silence.

Let’s get loud together.

Let’s make change happen.

I was over 60 when I learned I had HAE. - By Donna Simard 

Most people find out about their chronic illness after years of doctor visits, blood tests, or scary ER trips.I found out because my daughters and granddaughters were diagnosed.

When they told me I had it too, I was honestly confused.I hadn’t experienced the terrifying throat swells they had.No emergency room scares. No constant medical appointments.It didn’t feel like it could be the same thing.

But as we talked more about symptoms and patterns, something clicked.I started tracing things back—moments that didn’t make sense then but suddenly did now.

Every time I spent too long in the heat, I’d feel sick to my stomach. Not just a little off, suddenly nauseous, swollen, and wiped out.I used to think it was the flu, or maybe I ate something that didn’t sit right.But no—that was HAE.Same thing with being overtired. I'd push through exhaustion like most moms do, and the next day, I’d be completely unwell. Ankles swollen, stomach in knots. Again, I chalked it up to life.

But now I know better.

My symptoms didn’t look like theirs.But that doesn’t mean they weren’t real.HAE presents differently in every person—and that’s part of what makes it so hard to diagnose.Some people have throat swells and dangerous abdominal attacks.Others, like me, might go their whole lives brushing it off as “just one of those things.”

It’s been hard watching my daughters and grandchildren go through what they’ve gone through.Hard to see them so brave in the face of so much uncertainty.But I also know that being diagnosed and treated properly changes everything.

Now that I understand my triggers, I live more cautiously, avoiding heat when I can, resting when my body asks.Although I don’t need to treat daily or weekly like some of my family members do,I carry my rescue medication with me everywhere I go.Because the reality is—my life can change in an instant.And living in a rural area, being rare and misunderstood,that rescue med could be the only thing that saves my life.

We need to keep talking about HAE.To help families like ours.To make sure others don’t go decades thinking it’s just “tiredness” or a “sensitive stomach.”To remind people that even rare things deserve attention and care.

Because once you know what it is, you can start living with it, not against it.

I’ve basically been a professional patient my whole life -By Sydney Farquhar 

Hi, I’m Sydney and I’m almost 15. I was diagnosed with Hereditary Angioedema (HAE) when I was 13, even though I’ve basically been a professional patient my whole life. I was born with something called TEF/EA (which already gave me tons of issues with swallowing and my stomach), so dealing with medical stuff isn’t new to me.

But when they told me I had another thing, I was honestly just annoyed and kinda scared. I’d already been through so much—this just felt unfair. But it also solved alot of the mysterious events that were happening my entire life. 

What really sucks? IVs. It takes forever to get one in, and they usually have to poke me like 5–7 times before it works. Then there’s the Subq needle in my stomach… yeah, it burns like crazy. I seriously dread it every time.

And don’t even get me started on when my mouth swells, especially with braces. Imagine sharp metal wires pressing into swollen cheeks. It's the worst. Add in the stomach stuff and trouble swallowing, and it’s just a lot some days.

I try not to let this affect what I do. It’s more about just being prepared. I know sometimes I can’t do things I want because of it, but that’s just my life. For the most part, I manage. I carry my rescue meds with me everywhere, which makes me feel safer at least. I’ve watched my mom go through this forever, so when I got diagnosed, I wasn’t exactly surprised… just over it.

My mom worked with the school to make sure I’m safe there and that they have a plan in place, which is comforting. Thankfully, we haven’t had to use it yet.

I know people don’t really understand what it’s like. It’s rare. It’s random. And it’s hard to explain. But I hope that one day there’s just a simple pill I can take and I won’t have to worry about swelling or shots or missing school or any of it.

But until then, I keep going. I’m still just a teen with HAE… and I’ve got stuff to do.

Honestly it’s really tough sometimes - By Jaymee Moran

Hey, I’m Jaymee, 17. Living with HAE is honestly really tough sometimes. The attacks can come out of nowhere, and the swelling is not just painful; it can be really scary, especially when it happens in my throat. It’s something I always have to think about, even on good days.

I’ve been doing Sub Q injections (a needle in my stomach) twice a week for the last year. Sometimes I get bruises, and lately it’s been getting harder to poke through my skin. I’m honestly tired of it, but I really don’t want to learn to do IVs. I know I’m lucky that the Sub Q version is working for me, because it doesn’t for everyone.

A lot of times, my ankles swell up out of nowhere, making it painful to walk or do anything. If I don’t stop and rest when that happens, it can lead to a throat attack, which is terrifying. So I’ve had to learn to listen to my body and slow down, even when I don’t want to.

I’ve had to learn what my triggers are; stress and physical activity are the big ones for me. It’s still unpredictable, and that’s one of the hardest parts.

It can feel isolating at times, but I’ve also found strength in connecting with others who get it, and that helps me not feel so alone in it.

Living with HAE: The Diagnosis I Didn’t Want to Claim - By Amanda

My sisters were diagnosed first, and in some strange way, I convinced myself that meant I was safe. Invisible. Exempt.

I’m someone who defies the odds. If a doctor tells me I have something, I push back—I research, change my habits, do the work. I don’t want to be defined by a diagnosis.

So when HAE (Hereditary Angioedema) entered my family’s world, I kept it at arm’s length. That was their thing. Not mine.

I always believed them—especially in the terrifying, life-threatening moments. But there’s a difference between watching someone suffer and going through it yourself. It wasn’t until my body began shifting in 2020 that I realized something wasn’t right.

After trying everything for heavy periods and anemia, I agreed to an IUD(& removed it after 4 months).

In hindsight, I can’t help but wonder if that was the trigger for everything that followed. Shortly after, my health took a sharp turn. Rashes Unexplained symptoms. ER visits. Burning skin. Mysterious left-sides chest pain, strange throat sensations. Excess phlegm. Fatigue that didn’t make sense. And then one day, Stacy said, “Your eye is swollen.”

I got tested. My C1 esterase inhibitor levels were low—clear Type 1 HAE. My diagnosis came quickly, largely because of the hell Stacy had already gone through to get answers. She had paved the way, and I’ll never forget that. I started weekly IV treatments at the outpatient clinic, and eventually moved to TAKHZYRO, a bi-weekly injection. My sisters had to go through a year-long clinical trial to access it—so when I was approved quickly, I felt both grateful and heavy. Their road had been harder.

Those injections gave me my life back. I never pictured myself doing regular injections—but after nearly three years of treatment, it became my new normal. But even now, I rarely talk about it. Not because I’m ashamed—but because chronic illness is mentally exhausting. It’s invisible. It’s misunderstood. And sometimes, it’s easier to just keep going than explain something people can’t see.

Last year, I had an endometrial ablation and an iron infusion. By 2025, I missed a dose of Tak… and still felt okay. I paused the next one. Eventually, I stopped altogether. I’m assuming that not losing as much blood each month helped lower the stress on my body—and maybe that’s why my HAE symptoms eased. But I’m always listening. HAE is quiet, but never fully gone.

There’s also a lot of internal conflict that comes with that. My symptoms haven’t been as severe as my sisters’, and now I’m in remission while they’re still in treatment. It brings guilt, confusion—even grief. But also hope. Hope that one day, they too can be in remission. 

Living with HAE has changed me. It’s taught me to trust myself. To slow down. To speak up. To carry deep respect for everyone living with something silent and unseen. It’s deepened the gratitude I have for my sisters—for walking this path before me. 

I try not to worry too much about my own kids, but the truth is they each have a 50/50 chance of inheriting this. Three of my nieces have already been diagnosed, so I know this isn't hypothetical. I stay aware. I stay observant. I don’t want to live in fear—but I want to be ready, just in case. Because now I know how subtle the signs can be.

To anyone navigating an invisible illness—I see you. The daily mental load, the second-guessing, the quiet strength it takes to keep going—it’s a lot. But you're not broken. You’re not dramatic. You’re doing your best with something most people will never understand. Keep showing up for yourself. You’re surviving with grit, grace, and more courage than anyone realizes.

Living with HAE as a New Mom- By Emily Moran

I was 20 when I was diagnosed with HAE, exactly one year after my mom. I had no idea at the time how much that diagnosis would impact every part of my life.

One of the scariest moments I’ve ever experienced was when my tongue suddenly swelled. It felt like I was swallowing razor blades. I went straight to the ER, but even with a growing family history of HAE, they sent me home. I couldn’t believe it. Later that day, my mom came with me and pushed for answers. They finally gave me Berinert, and it worked within 10 minutes. But being dismissed like that left a lasting impression. I felt scared and alone—and angry that I had to fight to be taken seriously.

Living with HAE is frustrating. Spicy foods and alcohol were big triggers for me, and it felt like everything fun was suddenly off-limits. I also really hate needles, so the idea of giving myself an IV treatment was overwhelming. My boyfriend had to do it for me. After several hospital and outpatient care visits, I ended up getting a chest port placed, which has helped a lot. Now I can treat myself at home—but it took a lot to get to that point. I always felt like I was inconveniencing nurses and doctors when I would go in with an attack or treatment, and sometimes they honestly made me feel that way so I would avoid going if I could.

When I found out I was pregnant, I was already living with HAE. I was terrified. I didn’t know if the medications would hurt my baby, and while there’s one treatment considered safe during pregnancy, I still worried constantly. Thankfully, that treatment worked—but the anxiety never really left. I also live with the fear that I may have passed this on to my daughter. There’s a 50% chance, and just thinking about it makes my stomach drop.

I’m grateful that my attacks aren’t frequent, but that doesn’t make this disease any less serious. HAE is unpredictable, and that unpredictability is especially scary as a new mom. I never know when an attack will happen, and that constant worry lingers in the background every day.

Now that I’m a first-time mom to a five-month-old daughter, managing HAE is even harder. The exhaustion of being a Mom and the exhaustion of living with this disease is not something I wouldn’t wish upon anyone . There was one time I was in the middle of an attack and my daughter started screaming to be fed. Of course, like most moms, I took care of her first and just suffered in silence. That’s the kind of thing people don’t see. HAE is often invisible, but it’s always there, and there’s just no time for it in this season of life.

Sometimes I wish I could just take a pill and be done with it. But I can’t. Especially with breastfeeding and eventually wanting to grow my family. I am limited to Berinert, which of course I’m grateful that there is even at least one safe option. I often say this disease is a huge inconvenience, because it is. It gets in the way of everything. Trying to explain it to people is exhausting. Most people just look at me with blank stares because it’s rare and complicated.

But I keep going. For my daughter. For myself. I don’t have the luxury of ignoring this disease, but I also refuse to let it define me. 

When It’s You—and Then It’s Your Children- By Calinda Moran

I was diagnosed with HAE in July 2021 at the age of 43. It started with what seemed like a random ankle swell during a heat wave. Then, after a simple knee scope, my whole leg was attacked. At the time, I had been feeling completely exhausted and couldn’t figure out why. The diagnosis came quickly—thankfully—because my sister Stacy had already paved the way by navigating her own HAE journey. Her experience opened the door for mine to be recognized faster. She was the most amazing advocate for me and came to my appointments as well as several trips to the ER. Not sure what I would have done without her support because I was honestly terrified. 

By December of that year, I was accepted into a clinical trial. The medication I received through it has been life-changing. I’m beyond grateful for that access. But I also carry a deep sense of guilt—because while I’ve found some stability, my daughters haven’t had the same opportunities. Watching them face this same disease has been heartbreaking.

Exhaustion is still my biggest complaint. Heat, late nights, and large amounts of stress are major triggers for me. Over the years, I’ve developed a of lot of anxiety—always wondering:

Should I stay up late?

Can I have just one drink?

Is it safe to go lay in the sun?

Should I limit my physical activity?

What if this moment is the one that tips me into another attack?

That anxiety can be paralyzing. Living with a rare disease like HAE means you’re constantly calculating risk. Every plan, every activity, every small indulgence comes with a question mark. Will I pay for this tomorrow, or even in the next hour?

Emergency room visits have been some of the most frustrating experiences. Trying to advocate for yourself during an attack, when you’re in pain, scared, and vulnerable, is exhausting. It’s hard enough living with a rare illness, but it’s even harder when you’re not believed because the symptoms aren’t always visible.

When I was first diagnosed, I actually felt a strange sense of relief that it was me and not my girls. But that relief was short-lived. Just a year later, one daughter was diagnosed, and not long after that, my other daughter received the same diagnosis. All of us have normal C1 levels, which means treatment options are more limited and access to care is more complicated.

The fear I carry as a mother is something I can’t fully put into words. It’s one thing to manage this disease in your own body, but watching your children suffer through it, knowing exactly what it feels like and not being able to take it away, is something else entirely. The helplessness, the worry, the guilt—it never leaves.

This disease has tested me in ways I never expected. But it’s also revealed a strength I didn’t know I had. I continue to fight, to advocate, and to show up....Not just for myself, but for my daughters, and for the HAE community that deserves better understanding and better options.

“Why is it just the girls in your family?”

We get this question a lot.

Here’s the thing: Hereditary Angioedema (HAE) is genetic, so anyone can carry it. But estrogen can trigger or worsen symptoms, which means women, especially during puberty, periods, pregnancy, perimenopause, or on hormonal birth control, often experience more noticeable or severe attacks.

So while our brothers might not show symptoms, that doesn’t mean they don’t carry the gene. They might never have an attack, or one could show up years down the road. But they can still pass it on.

HAE doesn’t play fair. It’s unpredictable, shows up differently in everyone, and awareness is everything.

If you’ve made it this far, thank you. Really—thank you. This isn’t just our story. It’s the story of so many families navigating the unpredictable, exhausting, and often invisible world of HAE. And we’re done staying quiet.

You really want to help us?

Share this blog.

Tell someone about HAE.

Visit  haecanada

Watch the Special Blood documentary. It captures exactly what living with HAE feels like: the unpredictability, the fear, the isolation, but also the resilience. The hope.

Help us start the movement—one share, one conversation, one story at a time.

Because even if this only reaches one person who feels seen, who gets diagnosed sooner, who feels less alone, then it’s already worth it.

We're loud now. And we’re not stopping.