Living with HAE: Real Experiences
Patients share their perspectives on managing HAE attacks
Aaron, RUCONEST patients
Get to know:
Aaron
Alex
Lola
Nicolle
Tonya
Zakiya
Get to know:
Aaron
Alex
Lola
Nicolle
Tonya
Zakiya
Meet Aaron
Aaron was diagnosed with HAE at age 12 after his mother, who had HAE, recognized the symptoms. He struggled for years to manage his swells because he couldn’t tolerate other HAE treatments. At his doctor’s suggestion, he tried RUCONEST to manage his acute swells. After years of struggling with his HAE symptoms, Aaron found RUCONEST worked well for him. He once felt alone; today he’s a strong voice within the HAE community.
My HAE Type: Type I
I Started RUCONEST In: 2018
Where I’m From: South Carolina
I have hope that all the pain and misery that I have endured will be for a purpose. If that purpose is to make things easier for my children who have HAE, then I am okay with that.”
Meet Alex
Alex often had what she calls “weird swellings and pains”, which her doctors attributed to other conditions. It wasn’t until Alex ended up in the hospital due to abdominal swelling that her HAE was confirmed. RUCONEST has been a part of Alex’s treatment plan ever since. While in the beginning she was apprehensive about doing self-administration, she’s now comfortable with the process and loves that she can live her life more on her own terms.
My HAE Type: Type II
I Started RUCONEST In: 2017
Where I’m From: New Jersey
There are going to be bad days, days when you feel like you can’t get out of bed, or a swell hits you so hard you need another day to recover. But you have to remember it is temporary, and you will have a good day again. Do not let HAE define you, and do all you can to continue to live your life on your own terms.”
Meet Lola
Lola began having swells when she was 8 years old, first experiencing intense abdominal pain that worsened over time but then had a frightening tongue swell that sent her to the ER. After years of unanswered questions, Lola was diagnosed with HAE at age 13. After being diagnosed, she suffered 35 attacks in 27 days and her doctors began treating her with RUCONEST. With support from her RUCONEST Patient Advocate Nurse, Lola quickly learned how to administer her treatment at home. Now, she’s back to riding horses, playing volleyball, and preparing for high school, with a dream of becoming a pediatric nurse to help others like her.
My HAE Type: HAE-nl-C1INH (Normal)
I Started RUCONEST In: 2023
Where I’m From: Arizona
I am looking forward to being a RUCONEST Ambassador and showing other young adults that I am able to have an active and busy life again.”
Meet Nicolle
Nicolle always knew she wanted to be a mom-but nothing prepared her for the painful and unpredictable swelling attacks that began in her 30’s. When Nicolle was diagnosed with HAE, the news was overwhelming but finding a doctor who not only understood the condition but also empowered her to manage it, was everything. He introduced her to RUONEST, and with the help of a dedicated RUCONEST Patient Advocate (RPA), Nicolle learned to self-administer treatment during pregnancy. Today, she finds strength in knowing she’s prepared—not just for herself, but for her children.
My HAE Type: Type II
I Started RUCONEST In: 2022
Where I’m From: South Carolina
With RUCONEST, I have confidence that I have control over the situation.”
Meet Tonya
Tonya began having HAE attacks in 2022 when her throat appeared to be swelling about 3 months after having surgery. She had no idea what was happening, and the unknown was terrifying. After several trips to the ER, she could not get any answers. It was only after several additional swells and more testing that she was finally diagnosed with HAE and Tonya’s specialist prescribed RUCONEST for her attacks. With the encouragement from her specialist and her RUCONEST Patient Advocate (RPA), Tonya became determined to fight for her health and wants others with HAE to do everything they can to remain resilient.
My HAE Type: HAE-nl-C1INH (Normal)
I Started RUCONEST In: 2023
Where I’m From: Ohio
Life will undoubtedly be challenging at times, as it is for all of us. But with the help of HAE therapy and supportive people, I am once again loving my life.”
Meet Zakiya
In college, Zakiya suffered a severe swell and was treated for allergies in the ER, but her swells continued. Her allergist diagnosed her with HAE, but there was no treatment available at that time. For the next six years, she suffered swells, until her doctor recommended RUCONEST. Zakiya agreed that the plasma-free treatment was a good option for her.
My HAE Type: Type II
I Started RUCONEST In: 2018
Where I’m From: Tennessee
This is a hard diagnosis, but you have to do your part. Ask questions and work with your doctor to find the treatment that’s best for you.”
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