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The History of QT Boston / OAB Series - “In their own words”
CHAPTER II - "A New Thing"
 When our founders gathered to help each other, they did not meet to establish what we now would call a "support" or "self-help" group. The very idea that patients could aid one another was a radical one in the medical community of the 1950's. The term then was "mutual aid," which Edith Lenneberg defines as not only sharing practical knowledge about ostomy equipment but also helping each other over financial, practical, social, and emotional hurdles.
And the world was ready for this new approach. The 1954 Annual Report declared that "We expect our mailing list to double again in '55 and '56, not only through new ileostomy patients but also because older patients will be joining as our reputation is further established. Our patient list covers the country from Florida to Canada, from California to Maine. Our bulletin is even sent to doctors in London and Australia."
With its 1954 edition, QT began to publish the QT MANUAL, later called A MANUAL FOR ILEOSTOMY PATIENTS. The first issue was a mere thirty-three page mimeographed handout which sold for fifty cents, but there was nothing else like it. Early editions covered the best medical and practical information and were virtual "consumer reports" on the names and addresses of all known manufacturers with itemized lists of their products and prices.
Today we find it difficult to recall a day when there was no compilation of national equipment suppliers, of local retail stores, of mail order outlets, of lists of ET's who could offer advice . . . but only information about these resources passed along by word of mouth. As a result, the manual was instantly popular, so much so that by 1957 nearly fourteen hundred copies had been sold and another sixteen hundred distributed at no charge to professionals for educational purposes.
Revisions and expansions of the manual were published into the 1970's, by which time it had grown into a colorful, bound booklet of a quality any national organization would be rightly proud.
In the late 1950's, the reputation of QT Boston grew, aided by an article in "The New England Journal of Medicine" to which forty-five patients and fifty professionals responded. These correspondences were highly enthusiastic. Some came from residents of sparsely populated areas who were eager to receive information from other ostomates; others in more populous areas were seeking suggestions and recommendations for starting their own local groups. Professionals seemed pleased to find that there was a burgeoning patient-led organization disseminating knowledge about practical care.
Edith Lenneberg notes that "Whenever we heard from several people from a single community, we would make it our business to write them to tell them there were other people nearby who also had ostomies and would they like us to pass along names so they could get together? Many who wrote had heard about us, but declared they didn't know anyone else and we were their only contact. We always said they could write at any time, ask any questions, or request anything at all, but that they should be aware that there were others in their own communities who could help also.
We were the catalyst that brought many individuals together."
Florence Cohen also adds that "We got to be known. Dr. Brian Brook, the ostomy surgeon in England who developed the ileostomy (most people have 'Brook' ileostomies), came to Boston to meet with us for three days. He had done surgery for quite a while and wanted to start an ostomy association in England."
Edith Lenneberg continues: "I received one day a most official-looking envelope from St. Mark's Hospital in London. In it was a formal letter signed with a very large signature by a gentleman from the pathology department, one Dr. Cuspid Duke. He stated that it had come to his attention that we had a group for patients with ileostomies and that St. Mark's was a hospital that specialized in intestinal surgeries. Could we send him information and materials to help him start a similar group? I was most pleased to write back that I could, but perhaps he might find it easier contacting a colleague, Dr. Brian Brook in Birmingham.
"England did go on to develop both an ileostomy association and The British Colostomy Association. The colostomy group made a visit to us that afterwards led to a rumor (probably false) that still delights us. Florence Cohen knows the person who made that visit, one who declared that 'There are people with ostomies at Buckingham Palace--not Queen Elizabeth--but others.' So yes, there are some famous ostomates, some open about it and others who prefer (and deserve) confidentiality."
Excerpts from QT minutes from that period are most telling: "The work load has been extremely heavy. The requirements of new members have strained our resources, both financial and human, to their limits. Correspondence with new patients, as well as with doctors, has been handled with skill and devotion exclusively by Sylvia Kirshen."
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