The Gift of Experience, 2004-2007 (inclusive). H MS c228

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The Gift of Experience, 2004-2007 (inclusive). H MS c228


Includes recordings and transcripts of interviews with 21 hemophiliac men, aged 40 and older, who were patients at the Boston Hemophilia Center. Participants in the project discussed their experiences with living with and being treated for hemophilia. Also includes interviews with five nurses and physicians specializing in hematology and hemophilia treatment, several of whom worked at the Boston Hemophilia Center.

Collection Items

Oral history interview with Roy Arruda
Roy Arruda was born in 1960 in the Azores

His older brother, who also had hemophilia, died of complications from AIDS in 1995. Roy, who is not married, works as a nursing assistant with people who have AIDS. He is an avid hiker on the Appalachian…

Oral history interview with Avida
Avida was born in Massachusetts in 1964. At the age of nine he moved to Michigan

He has an advanced degree in psychology and is currently working to grow a nonprofit community arts and wellness center in Massachusetts

He has severe hemophilia,…

Oral history interview with Wendell Bourne
Wendell Bourne was born in 1948 in Cambridge, Massachusetts

He is married and has four children and one grandson with

Mr. Bourne is the director of multicultural education for Kindergarten through 12th grade in the Cambridge school…

Oral history interview with Clifford Deschenes
Cliff Deschenes was born in 1954 in Lawrence, Massachusetts

He works in electronics at Wang Laboratories and is married with two children. One nephew has hemophilia

He has learned to take one day at a time so as not to get too frustrated. Cliff…

Oral history interview with Michael Donovan
Michael Donovan was born in Boston, Massachusetts
in 1962. After his father left the family, Mr. Donovan’s mother moved to Houlton, Maine and, later, to Whitman, Massachusetts, where Mr. Donovan went to school

He has a degree in electronics and…

Oral history interview with Michael Dowling
Michael Dowling is a single man who was born in 1960 in St. Albans, Vermont

He has been very active in the HIV and hemophilia
community. He learned of his positive HIV status when a public health official told him from his car in a parking lot…

Oral history interview with Jeryl Drummey
Jeryl Drummey was born in 1941 in Brighton, Massachusetts

Married with one daughter, he worked for ten years in a bookstore and then for twenty-five years for a distributor of women’s clothing. Jeryl feels strongly that health providers must…

Oral history interview with Andrew Flagg
Andrew Flagg was born in Massachusetts in 1959. His father was a plant manager at a plastics firm and his mother was a bookkeeper. He has two older sisters. His grandfather died from complications of hemophilia when Mr. Flagg was eight years old. Mr.…

Oral history interview with Theodore Frost
Theodore Frost was born in Haverhill, Massachusetts
in 1915. Theodore, who was married but had no children, worked as a carpenter most of his life. He has many memories of years spent in the hospital when he was a child and the miracle of Factor…

Oral history interview with Robert Jarratt
Robert Jarratt is a married man who was born in 1943 in Tennessee

He is married and has a daughter. Bob was diagnosed when he was in the Air Force and the confirmation of his diagnosis ended his military career. After open- heart surgery in the…

Oral history interview with Christopher Kucinski
Christopher Kucinski was born in 1949 in Brockton, Massachusetts

Married with four children, Chris grew up in a family of ten, seven of whom had hemophilia

Chris was loved deeply by his family and was a beacon of hard work and positive…

Oral history interview with David LePage
David LePage was born in 1963. David is single and lives alone. He has dealt with mental and physical challenges throughout his life. He has been a public speaker about his experiences living with chronic illness and has found that his faith has been…

Oral history interview with William Lynch
William Lynch was born in 1960 in Fall River, Massachusetts.
He went to school in Fall River; his mother was a nurse and his father was a school principal. When he was diagnosed with
hemophilia at age one, it came as a surprise to his family…

Oral history interview with James Martinowsky
Dr. James Martinowsky was born in 1953 in Washington Heights, New York

He has moderate factor VIII deficiency and hepatitis C. He is married and has one teenage son. James is a child, adolescent and adult psychiatrist teaching and practicing in…

Oral history interview with Robert Massie
Robert Massie was born in 1956 in New York. His parents wrote the book Journey, an autobiographical account of their son with hemophilia

Mr. Massie is an ordained Episcopal minister and also has an MBA from Harvard College. He is married and has…

Oral history interview with Stephen Place
Stephen Place was born in 1954 in Oak’s Bluff on Cape Cod’s Martha’s Vineyard Island. Stephen is married and has two daughters. He has worked in sales. He has a nephew with hemophilia. He believes you must “know your limits and go to the limit.” He…

Oral history interview with William Somers
William Somers was born in 1964 in Lutchlade, England. He is married and has one child. He has a PhD in biophysics. Coming to the United States and dealing with our health care system was quite a shock. He has moderate factor VIII deficiency and…

Oral history interview with Francis Story
Francis Story was born in 1928 in Beverly, Massachusetts.
Sonny, as he is known, is married and has six children. He has grandsons affected with hemophilia. Sonny grew up during the Depression and has vivid memories of that time. He played in a…

Oral history interview with Matthew Vieira
Matthew Vieira was born in 1934 in East Boston, Massachusetts. His father, who was Portuguese, worked as a truck driver. Matty had two sisters and describes his home as “Just an average American family.” Mr. Vieira has one son. He and his wife…
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