Elaine K. Harris

Sjogren's Syndrome Activist

n 1982, Elaine Harris was diagnosed as having Sjogren's Syndrome, a malfunction of the immune system, resulting in extreme dryness of the eyes, mouth, nose, throat and skin, accompanied by extreme fatigue and malaise. Faced with a disease with no cure, that requires the combined medical expertise of several different specialists, and no patient information resources, Mrs. Harris embarked on the journey from frightened patient to dynamic activist.

Out of the anger, frustration and loneliness of this situation, Mrs. Harris started The Moisture Seekers, incorporated in 1985 as the Sjogren's Syndrome Foundation (SSF). Fourteen SS patients plus their families attended the first meeting. From that small beginning, SSF has grown into an international organization with 6,000 members, both patients and professionals. She lead the Sjogren's Syndrome Foundation first as President and now as Executive Director.

Elaine Harris is recognized as the leading source of public information and patient service education on Sjogren's syndrome. Her testimony before the Orphan Drug Commission on behalf of Sjogren's syndrome patients was instrumental in bringing about the sponsorship of an HIH conference, The Many Faces of Sjogren's. She has been invited to participate in major conferences throughout the United States.

At the international level, Mrs. Harris represented the Foundation at all four International Conferences on Sjogren's syndrome. At the Third Conference, she received an award in recognition of her work in having started and developed an international network of support groups for SS patients and the health professionals involved in their care.

Elaine Harris is the editor of the Foundation's monthly newsletter, The Moisture Seekers, and served as editor of The Sjogren's Syndrome Handbook, which has been translated into Japanese and is also available as a cassette recording for the visually impaired. She has authored articles on The Patients Perspective and The Self-Help Approach to Sjogren's Syndrome.

Mrs. Harris developed the Foundation's programs of national symposia to educate patients and professionals on the many aspects of Sjogren's syndrome. Her advocacy for the development of clinics to provide coordinated care by teams of knowledgeable specialists has resulted in the establishment of several clinics in various parts of the country.

Elaine Harris received her BA degree from Hunter College and her MA from Columbia University. In April 1989, she was elected to the Hall of Fame of Hunter College in recognition of her work on behalf of Sjogren's syndrome patients.

She is married to Herbert Harris. They have three children and six grandchildren.

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