Living With Lupus by Dale Obermeyer

An article about Joan McKee (Founder of the Lupus Society of Hamilton)
as published in the Society's Newsletter in September 1994

Spending an afternoon recently with Joan McKee, I realized what a privilege it was to sit down and reminisce about her accomplishments as founder and first president of The Lupus Society of Hamilton.

Joan was born in London, England. She lived through the Second World War bombings and worked at the War Cabinet alongside Winston Churchill! Joan met and married John who was a bomber pilot, trained in Canada. They then decided to settle in Canada in 1951 with their daughter Jacqueline. John has been a terrific support for Joan throughout their marriage even though he has had four bouts of open heart surgery.

As Joan showed me page after page of newspaper clippings and photographs, I came to appreciate the tremendous effort she has put forth in the past sixteen years.

Perhaps the highlight of all this volunteer work for lupus, came in the nomination and subsequent presentation of the "Woman of the Year" award she received for the Hamilton-Wentworth area in 1978.

The Lupus Society of Hamilton was founded as a result of Joan's frustrating time being diagnosed with lupus. After years of being misdiagnosed with syphilis, Joan happened to be vacationing in Florida where she developed a skin rash and became very ill. Quickly returning home, Joan was examined by her dermatologist, Dr. Louis Stolman, who, after doing a biopsy on Joan's skin rash, made the diagnosis of Discoid Lupus. [Discoid Lupus, a milder form of lupus, generally affects the skin, but it can be a forerunner, or part of a more serious involvement called Systemic Lupus Erythematosus,(SLE)which attacks the body's major organs and systems].

Dr. Stolman was instrumental to Joan in the creation of The Lupus Society of Hamilton."He went on to become our first member of the board. He helped me to get established - he was just marvelous," Joan remembers.

Following treatment for her skin rash, Joan developed other more serious symptoms including fatigue, joint pain and blood problems. She was sent to Dr. W. Wilson, a hematologist in Hamilton, who that Joan had systemic involvement, and confirmed that she had Systemic Lupus Erythematosus.

Dr. Wilson continues to be a tremendous support to Joan as he has been though the years of her illness.

But still Joan felt isolated and fearful. "I realized that there must be so many people like me who were so alone and didn't know what to do. And in Canada, there were only two groups at that time - one was in Ontario, the other was out West."

Because of this Joan decided to form a lupus support group on her own. She contacted the late Betty Lou Lee, a medical reporter for The Hamilton Spectator, to do an article about lupus. When Betty's article came out on December 12, 1977, Joan was inundated with phone calls from people, like herself, all of whom had lupus, yet, who had no support whatsoever.

The first meeting, the following February, was held in Joan's church, All Saints' Anglican Church, in Hamilton, with approximately 68 people in attendance.

From an initial collection of $5.00, The Lupus Society of Hamilton managed to raise more than $250,000.00 for research by 1993. This tremendous amount of funds has come from holding fashion shows, trips to shopping outlets, great financial support from the Gamma Beta Chapter of the Beta Sigma Phi Sorority, as well as other fundraisers and personal donations.

Joan's reason for founding The Lupus Society of Hamilton was "to offer support and to get together with other people who had it - to see whether their symptoms were the same, or if everybody had something different," Joan explains.

This emotional support gradually branched out into financial support for research and to increase awareness of lupus in the public domain.

Joan is still quite shocked at how few people really know anything about lupus. She also feels that this disease has not been given enough attention when compared to other diseases. When lupus is mentioned, it has usually been added at the end of a long list of other chronic illnesses.

So then, how do we raise awareness of lupus? Joan has several ideas. She would like to see doctors who treat lupus patients become more involved. For example, meetings could be held periodically involving both doctors and patients in a question and answer session to raise concerns for both sides. Doctors in the past have been supportive of Joan's efforts; however, she feels that lupus patients need to question every aspect of their treatment.

Since 1978, volunteers of The Lupus Society of Hamilton have worked tirelessly. Two women who were of tremendous help and support to Joan at the outset of The Lupus Society of Hamilton, are Jean Ingram and Ruth Frost. Jean and Ruth continue to be active to this day: Jean as the secretary for the Society, and Ruth as a member of the Telephone Committee.

"So many have been there from the beginning and that's why we have to get new people, new themes, to keep it going and give it some zip," Joan says.

"You have to have people that are going to work...keeping contact with patients is important. I think anybody that's older should gradually step back and let the young people do it, but at the same time, be willing to help and offer guidance."

Many newly diagnosed patients call Joan for advice and counsel. She encourages them to see specialists in the field of lupus, such as Dr. Judah Denburg, who heads the Lupus Clinic McMaster University Medical Centre (now known as the Hamilton Health Sciences Corporation) in Hamilton. As well, Joan gives the names of rheumatologists who are well versed in the treatment of lupus, and.sends out brochures and literature from her home to patients.

Joan gives much credit to her husband, John, for his help and support over the years. "I couldn't have done it without him," she says. John often fields questions from the many patients who still dial the McKee phone number in search of information or advice.

Dale Obermeyer is the Editor of Lupus Life for The Lupus Society of Hamilton.

More Stories

Home