HAE Caregiver Doesn’t Stop at “Til Death Do Us Part”

As reported by the the Northan Onterio Medical Journal, Vaugn Ungar, native of Kapuskasing, died in 2011 of a rare disease called Hereditary Angioedema–he was only 58 years old.

Hereditary Angioedema, according to the US Heredtiary Angioedema Association (HAEA), is a rare and potentially life-threatening genetic condition, which includes episodes of swelling in various parts of the body including the hands, feet, face, and most dangerously, the larynx. The disease is often characterized by horrendous abdominal pain and nausea.Patients with HAE have a defect in the gene that controls a blood protein called C1 inhibitor.

Hereditary angioedema attack
An example of a Hereditary Angioedema swelling attack. Source: Wikipedia

Being so rare, there are many doctors still unaware of the disease--meaning many people with HAE go misdiagnosed for many years. For some, like Ungar, much-needed answers come too late.

Ungar had inherited HAE from his father, along with two of his five siblings. Throughout his life, Ungar had HAE attacks or swellings most often in the abdomen, which he simply suffered through–sometimes resulting in a hospital trip to rehydrate after vomiting every 20 minutes within a 30-hour span.

Having Charcot-Marie-Tooth (CMT) as well, Ungar was very accustomed to hospital trips.

While there in 2004, Ungar slipped into a coma from a spontaneous bleed in his abdomen. During that time, he was treated by Dr. William Yang, an allergist and immunologist with an interest in HAE. To be closer to his care, Ungar and De Pauli moved to Ottawa in 2005, but in the summer, returned to their cottage in Michigan.

It was at that little summer cottage in 2011 that grief intruded. After being hospitalized for taking a fall and hitting his head, Ungar passed away. De Pauli remembers the call from the hospital informing her that her husband had died–cause of death: Acute Respiratory Distress Syndrome (ARDS). Not knowing any better, she accepted the answer.

HAE Patient Vaughan Ungar
Vaughan Ungar posing with his cat. Source: Nomja.ca

A year later, after a meeting with Dr. Yang, De Pauli began to revisit the cause of death. Dr. Yang figured it hadn’t been ARDS at all, but pulmonary edema (fluid in the lungs). Dr. Yang informed De Pauli that HAE patients should be given C1 esterase inhibitor no matter what upon arriving at the hospital.

Legally, this could have ended in a nasty court battle, but De Pauli and the hospital chief of staff, Dr. Heather O’Brien, collaborated their efforts in expanding medical understanding, resulting in the establishment of  the Vaughan Ungar Memorial Fund, aimed at educating health care professionals about the diagnosis and treatment of any mysterious disease.

Last year, the fund helped cover the cost of sending a doctor and a nurse practitioner to an allergy and immunology conference in Ottawa to hear Dr. Yang speak about HAE and its treatments–and De Pauli has even bigger plans for the years to come.

Lady Kehveen Abernathy

Lady Kehveen Abernathy

Lady Kehveen Abernathy, of noble birth (or so she’d like to believe), is what many would call a youthful “old soul.” As a self-proclaimed “caregiver to the world,” impassioned about life, triumph, and all things beauty, Lady Kehveen strives to love others, seek understanding, and most importantly, spread awareness. But don’t let her sweet demeanor deceive you. Dressed to the nines over corset and petticoat, she’s made it her mission to defend the innocent and fight all things evil on this Earth. And being no stranger to chronic disease, she knows exactly where to start.

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