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Anyone with HAE knows that no two people share the same triggers, severity of attacks, or journey to diagnosis. Every HAE story is unique and valuable.
The stories profiled here tell of struggles and triumphs. One story may sound very familiar, and another experience may reveal aspects of living with HAE that you have never encountered yourself. Learn more about the people living with HAE, and take a minute to share your own story.
My name is Red, and Hereditary Angioedema (HAE) is a part of who I am. I had my first attack about 60 years ago when I was 13 years old. It was a stomach attack, and we initially brushed it off as having been caused by something I had eaten. It was not until a few months later when I had my second attack, that we knew for sure it was HAE. My mother lived with HAE all her life, and did not want to believe I had it as well. Her mother had died from HAE swelling in her throat. Many of my family members also have it today, including my siblings, children, grandchildren, and even my great-granddaughter.
I have had swelling in my hands, feet, my face, in my back, across my chest, intimate areas, and internally in different parts of my stomach – all without any known real reason or cause for the attacks. For years I struggled to find a doctor who knew anything about HAE. When my first HAE physician passed away, the HAEA helped me find a knowledgeable new doctor and helped me enroll in a clinical research study for an acute treatment. It was like a miracle for me. Like turning a light switch off, within minutes the stomach pain subsided. Since that time, I have also been involved with two more research studies.
The HAEA has been very supportive for me, providing new information and resources on an ongoing basis. I have been to several HAEA conventions and workshops, where I have met with doctors and patients who have shared their stories and helped influence the HAE way of life. As a community, we have come a long way in the last 10 years, and I will continue to do my part to help find treatment and possibly a cure for this condition.
My name is Richard and I live in Warwick, Rhode Island with my wife and two daughters. For me, living with HAE certainly has felt like a lifelong struggle. I was diagnosed at age 18, when I had my first known swelling in both arms, like Popeye. At the time, I went to Boston Children’s Hospital, where I was able to participate in clinical trials for Normal C1-Inhibitor therapy. In my first trial, I had to arrive within four hours of any major attack, and spent long hours getting bloodwork and infusion therapy. For me, swelling attacks in my stomach were particularly painful and sometimes meant I could not keep anything down for days.
Having access to medication has changed my life. Today, I use a prophylactic medication once every two weeks and an acute treatment for breakthrough attacks. Now with newer available medications, I hardly get attacks and it has been years since I have had to go to the hospital. I am able to infuse myself and my medication requires no office trips.
I am certainly grateful for all the work the HAEA and its representatives have done for us and I can't imagine not having had the support from the association. My journey has been long and arduous, but filled with support from my family, friends, and the HAEA. The promise of new treatments being discovered has made me stronger and hopeful for the future.
My name is Kemmi and my first HAE attack was when I was 22 years old and pregnant with my first daughter. It was a throat attack and I was treated like I had allergies and anxiety. For many years, I struggled with attacks and hospitalizations and was prescribed antidepressants. I felt like a burden and defective.
At age 48, again in the hospital without answers, I stumbled upon the HAEA and spoke with an HAE Advocate who assured me that I wasn’t alone and that I wasn’t crazy! Within a matter of days, everything changed – I had a doctor, an HAE diagnosis, and a referral to Dr. Riedl! The stress and trauma of repeated ER visits no longer had to be my normal.
Today, I have an excellent quality of life and I don’t live in fear of attacks. If I have to go to the ER, I carry my medical records and I'm taken very seriously. I get immediate care and haven’t had to be admitted. Through the HAEA, I am incredibly happy to have joined an amazing community of doctors, patients, and advocates. Because of my treatments, this disease no longer has to be my identity.
My name is Mary and I was diagnosed with HAE around 11 years old, following a series of strange and random arm swellings. I was too young then to realize the impact this condition would have on my life. I just knew I was different and that no one I knew (or so I thought!) had what I had. After my diagnosis, I felt alone and could not relate to others. Back then, living with HAE meant living with uncertainty and fear, no matter how optimistic I am by nature.
Today, living with HAE means two injections a week, and going to bed each night not worried about which body part I’ll be unable to use the next day. Thanks to my expert physician and new medications, I went from having attacks twice weekly to not having a single attack in five years. My body no longer limits me. It inspires me. It propels me. I have the freedom to run and play my guitar. Being swell-free for five years on treatment is something I do not take for granted. Even at my very worst with my attacks, I knew there was a light at the end of the tunnel. I will never be able to wrap my mind around the enormous blessing of treatment for HAE.
I never imagined I would meet other people with HAE but I have always hoped for a cure. Through the HAEA conferences, I have met other patients and advocated for patients as well. The HAEA staff have been there for me and my family and they feel like family! Patient support, physician support, and mental health support are so important. I do have HAE, but it does not hold me back.
I’m Ashna and I was 16 when I was diagnosed with HAE. Leading up to my diagnosis, I experienced random swellings all over my body and even underwent unnecessary appendicitis surgery. Nobody in my family had HAE and none of us had any idea what living with it would mean, which made my diagnosis that much harder for us to navigate. I was very active with sports and felt scared and worried about what my future held.
Fortunately, the HAEA provided support for my family and me which made the journey easier. The insurance battle to get medication was a very tough experience for my family to face, but the HAEA helped us through it. In connecting with members of the community, we were able to address our concerns and establish a plan to handle the disease. I felt empowered to communicate with coaches, friends, and teachers about what this disease means for me and how I take care of myself. We then took our experience with the disease and began to advocate.
I am lucky enough to have all the support from my community and family that has made it possible for me to live a normal life while remaining healthy. There have been challenges, however, they never stopped me from playing sports or negatively affected me.
I’m Hailey and 18 years ago, I was diagnosed with HAE at age three. A horsefly bit my forehead and I swelled far more than anyone should. My mother immediately knew that I had HAE, as she herself has it too, as does my grandmother and uncle. From that day on, my attacks started mainly in my abdomen and hands. It was particularly hard on my mother because she knew the gravity of the disease and worried about me constantly. At the time, there were no accessible treatments, so I was sent to the hospital for an IV flush of saline following every attack.
Managing school and my illness was challenging. I missed a lot of school when I wasn’t on any treatment, had to make up a lot of material, and missed a lot of school functions. I didn’t get to experience all of the things young kids normally do. I enrolled in a clinical trial that was vital to my health, but when it came time to choose a college, I felt stuck. I felt that I needed to choose a nearby college in order to remain enrolled in the clinical trial. With HAE, there are a lot of restrictions that permeate into a lot of different areas of life.
The good news is that there have been tremendous improvements in treatment options over the years, which have changed my life. I am now on an amazing medication – just a shot every two weeks – and I have not had an attack in two years. Now, traveling and everyday activities are much less stressful and my life is much more carefree. I was also awarded the Pam King HAEA Scholarship, which helped me choose a college and succeed as a student. Most importantly, I no longer harp on the fact that I have HAE because there are days I don’t even remember I have it! When I was younger, I never thought that would be possible, but the breakthroughs that modern medicine continues to achieve have really changed my life for the better.