The Vaughan Ungar HAE Memorial Fund Mission Statement
‘The VUMF exists to raise the awareness level of and expand the knowledge base of medical personnel in northern Ontario by offering financial assistance associated with conference attendance.’
The Vaughan Ungar HAE Memorial Fund Vision Statement
To ensure those with HAE and other related Angioedema receive a correct diagnosis followed by timely and appropriate medication to alleviate pain and suffering thereby achieving an improved quality of life.
About Vaughan Ungar
Vaughan was truly a very special individual who faced both his life and HAE with courage, dignity and humour. When in hospital, he would always allow extra personnel to be present in order to learn about his conditions. He had great respect for education and enormous compassion for those who were genuinely suffering. The Fund is an ideal vehicle through which these qualities can be nurtured in others, who are in a position to help, and through which he can be remembered in a most rewarding way. It is profoundly gratifying to know that his life, his suffering, his experiences and his death will all be used to reach out to others with HAE to lessen their suffering and to improve their quality of life.
Vaughan Ungar was born in 1953 and raised in Kapuskasing, ON. Once graduated from Algonquin College as a Mechanical Engineering Technician and Technologist, he began his career in 1977 in Sault Ste. Marie, ON at the Algoma Steel Corporation (now known as Essar Steel Algoma). In 1980, he married Paula De Pauli. In 2000, he left his position as General Supervisor of Maintenance Systems Development and Maintenance Technology, where he headed up 60 employees, to go on Disability. In 2005, Vaughan and Paula moved to Ottawa to be closer to specialist medical care. He passed away in Sault Ste. Marie in 2011.
He was the 3rd of 6 children and the first of 4 boys. He inherited Charcot Marie Tooth Disease from his mother and HAE from his father. The HAE diagnosis came in his teens and following statistics, only the first three had it. His father passed away, in Ottawa, at 47, with Lupus stated as the cause.
Throughout his adult life, he endured bouts of HAE with no relief or medicine of any kind except for IV solution when in hospital due to dehydration, gravel for nausea and Demerol for pain. In October 2000, he almost died due to excessively low blood pressure caused by an Ace inhibitor. In December 2000, he survived 19 days with an aortic aneurysm and dissection before an air ambulance flight to the Ottawa Civic Hospital where he had open heart surgery all the while dealing with HAE.
In 2004, at the same hospital, while readying for yet another surgery for another aneurysm, he developed a retroperitoneal bleed for (no apparent reason) and spent three months ICU and another three weeks in general population. During that time, in order to keep him alive, he was given medications contraindicated with CMT which affected his ankles resulting in an inability to walk without aid and soon afterward became wheelchair bound.
Every day while in ICU, Dr. William Yang would come in to see him, to make sure he was receiving the C1 esterase inhibitor and to give mini lectures to the assisting staff. Dr. Yang later made Vaughan the unknown subject of a major paper he delivered to an international conference of immunologists and allergists.
ABOUT HEREDITARY ANGIODEMA (HAE)
Hereditary angioedema (HAE) is a rare genetic disorder characterized by episodes of swelling (edema attacks) in different areas of the skin or the internal organs. In particular, it occurs in the upper respiratory tract and intestine.
Edema of the skin occurs mainly in the face (e.g. lips, eyelids), although the extremities and genitals are also often affected. In many cases, patients experience swelling and tightness of the skin or a tingling sensation, and in some cases pain. Although it is not life-threatening, people with this kind of edema often withdraw from their social lives because of the disfiguration caused.
Edema of the mucous membranes of the larynx, nose or tongue is potentially life-threatening, as it can cause death by suffocation. Symptoms that are felt just before an attack in the throat may include difficulty swallowing, a hoarse voice, whistling or wheezing when breathing, a swollen tongue, cough, or shortness of breath. Patients who experience these symptoms and suspect the start of such an attack should seek emergency attention immediately. More than 50% of HAE patients will have at least one laryngeal edema in their lifetime.
Abdominal pain is reported by 70-80% of patients with HAE. This manifests itself primarily as loss of appetite, nausea, vomiting, diarrhea and abdominal cramps. If HAE has not been diagnosed in these patients yet, suspicion of colic or appendicitis can lead to unnecessary surgical procedures or even to removal of healthy organs.
It is estimated that about 1 in 10,000 to 1 in 50,000 people worldwide have HAE. It occurs with roughly the same frequency in men and women. Most patients experience their first attack during childhood or adolescence.
The development of edema does not follow a typical pattern and therefore the site of the next episode of swelling cannot be predicted. The frequency, duration and severity of the edema vary considerably. Approximately a third of patients report more than one 1 attack per month; about 40% of patients experience on average 6-11 attacks per year and the remaining 22% only suffer attacks from time to time. In most cases, the symptoms of HAE increase over 12 to 36 h and last for 2-5 days before resolving. However, some patients may experience attacks that last over a week.
Most HAE attacks occur spontaneously, but patients can often link specific situations that occur in their lives, such as stress, infections or even the consumption of certain foods, to the development of edema.
The disorder places extraordinary strain on patients, often restricting their ability to lead normal lives. Untreated patients with HAE can lose 100 to 150 work days per year – if not more!