Support for Canadians with Porphyria
Lois Aitken’s Story
In 1975, after suffering from an extremely long illness, in and out of hospitals, I was diagnosed with Hereditary Coproporphyria (HCP). At that time the medical textbooks contained one small paragraph of information on porphyria and that was scary and erroneous. While I was in hospital after being given certain medications, mostly sulfa drugs or barbiturates my arms and legs would become paralyzed. My diagnosing doctor, Dr. Brent Schacter, in Winnipeg, Manitoba, told me that I was the third person diagnosed with HCP to be recorded in the world medical records. I was sent home to cope and deal alone with my acute symptoms. There was nowhere to turn for porphyria support and education. I felt helpless and hopeless.
A year later Dr. Schacter put me in touch with the American Triad Foundation, which later became the American Porphyria Foundation (APF). What started out as “my need to learn more about the disease I suffered from” soon turned into the APF’s volunteer Executive Director, Desiree Lyon, asking if I would communicate with other Canadians who were contacting their foundation for porphyria support. I worked for ten years with the APF as a Canadian volunteer coordinator.
During this time a 14 year old girl from Quebec, whom I was supporting and corresponding with, died of porphyria. I was so severely affected by her death that I made a commitment to devote my life to promoting awareness of the porphyrias in Canada. At that time there was no internet available where I lived at Neepawa, Manitoba. All my communicating was done by telephone or letters sent through Canada Post.
Gradually the muscles in my arms and legs gained strength. I took macramé classes to force my arms and legs to get stronger. Close by where I lived there was a handicapped centre and I thought it would be very good therapy for me to walk over to the centre and volunteer my help. The director suggested that I spend time with a woman whose name was Arlene. Arlene’s hands were slightly withered and her legs were in braces to help her walk. We spent a year once a week making macramé pieces and then one day she said to me, “Did you know that I have porphyria?”. I was shocked! She nearly blew me away! I had been told that I was one of three people in the world with porphyria. How could it be possible that in a little town with a population of 4000, there were two of us with diagnosed porphyria?
The following week and for many weeks after, Arlene told me the full story that in the late 1940’s and early 1950’s she and many of her extended family members had been tested and diagnosed with Acute Intermittent Porphyria (AIP). Arlene had been the first to be diagnosed by Dr. Cherniak at the Winnipeg Hospital. At that time she was in the Winnipeg Hospital on an iron lung when the doctor noticed that the urine in her bedpan was purple. He had studied porphyria and recognized the symptoms. Dr. Cherniak then did extensive testing on Arlene’s family members and diagnosed many of them with AIP. Three of her family members attending that first meeting in 1988 joined my husband, my sister and myself to make up the steering committee which later became the first board of directors.
A Canadian Porphyria Organization Begins
In 1987, under the encouragement of Desiree Lyon at the APF and Dr. R. Galbraith (porphyria researcher) from New York, NY, USA, I began planning a porphyria organizational meeting. This meeting took place on January 15, 1988 in Neepawa, Manitoba with 23 people from the Yukon, Saskatchewan and Manitoba attending and at meetings end making a unanimous decision to form a Canadian Porphyria Foundation (CPF). At that time I volunteered to give three years as president!! Dr. David Chapman a local physician joined us whenever he could as Medical Advisor. A steering committee was formed. There were seven of us and not one of us had ever taken a leadership role before so our first job was to attend as many “organization development workshops” as we could to learn what our volunteer jobs consisted of. The group agreed that at this point consensus was the best route to take for all decision making. A board of directors was elected. A registered nurse from our community offered to serve as secretary. Our main objectives were to offer support and education for those who suffered with porphyria. Our mission was to improve the quality of life for people affected by porphyria. I felt privileged working with these dedicated and committed volunteers.
We attained our national registered charity status on September 20, 1988. The first annual general meeting was held on January 15, 1989 at Neepawa, Manitoba. We invited Dr. Brent Schacter to be our guest speaker. He welcomed the opportunity to speak about porphyria. He taught us a lot, but he also made us realize how little we knew about the disease.
The first years were very busy for me because we were growing the CPF and at the same time I was taking volunteer management courses at Brandon and Winnipeg universities to learn how to develop our national charity.
Annual fundraising events, membership fees and donations supported the cost of producing the bi-annual porphyria educational newsletter. Canadian medical professionals who had studied the porphyrias or were doing research wrote articles for the newsletter. The newsletter was distributed to those diagnosed with porphyria and their medical professionals. It was also used to promote awareness of the porphyrias and sent to hospitals and health centres across Canada, the USA and internationally.
Our numbers grew. One day I came to the realization that directly across the street from me lived a couple whose nephew had Variegate Porphyria. Four houses to the west of me the couple’s two nieces had Erythopoietic Protoporphyria. On the next block to the east of me, one of Arlene’s relatives had Acute Intermittent Porphyria. And I was diagnosed with Hereditary Coproporphyria. To this day I find this mind boggling!
Dr. Peter Meissner from South Africa sent us a copy of an educational booklet prepared by the South African Medical Liver Research Centre about the different porphyrias and he encouraged us to “use it in any way needed”. The booklet also included an extensive list of safe and unsafe drugs in porphyria. We were delighted! He offered their support in “any way they could”. At this time the board of directors encouraged me to hold both the president and executive director positions.
Dr. David Chapman authored a pamphlet which was an introduction to porphyria. The CPF produced the bilingual pamphlet and distributed it to the general public to promote awareness. Dr. George Sweeney, Hamilton, Ontario wrote individual articles on four of the most commonly found porphyrias in Canada. Each article provided an easily read description of the disease along with general information to assist the patient in dealing with the condition. Dr. Barry Tobe, Downsview, Ontario wrote an in-depth booklet titled, “A Guide to Porphyria”. The booklet was designed for healthcare professionals and for individuals wanting to learn more about their disease. He included a “considered to be unsafe” drug list. Twelve foundation members volunteered to assist Dr. William Schreiber, Vancouver, BC in his research of Acute Intermittent Porphyria.
A medical advisory board was formed by invitation. We hired one part time staff. We developed a confidential database for diagnosed members and their physicians.
CAP, Inc Closes Their Door in 2011
In 2008 because the term “foundation” in Canada had changed over the years to now mean a money holding organization we changed the organization’s name to the Canadian Association for Porphyria, (CAP). The name of our organization changed but we continued to give quality education and awareness services and caring support.
On September 16, 2011, due to lack of funding, we surrendered our charity status and dissolved the organization.
The closing of CAP was not a shock to us, we saw it coming; we prepared for it. I encouraged everyone to realize that it was a good thing we were closing because in Neepawa we were located too far away from sources that could help, e.g. universities, medical faculties, medical professionals or medical students. At the end of December, 2011, I closed CAP’S door with the best positive feeling I could, believing that, “sometimes a door has to close in order to let another door open”.
The Canadian Association for Porphyria/Association Canadienne de Porphyrie (CAP/ACP) Begins Again
Wendy Sauvé from Edmonton, AB became involved with our organization and started the preliminary work of forming a porphyria group in Edmonton. Her hope was to develop an organization in her area. By the time CAP was closing in 2011 Wendy had a group organized in Edmonton and her dream was to take over CAP.
In 2014, CAP/ACP became a national registered charity once again.
Source: Lois Aitken, 2015