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Between 1919 and 1977 our grandfather, Edmond Landry, and four of his siblings were hospitalized at the United States Public Services Hospital in Carville, Louisiana.  They all spent the last years of their lives there because they had been diagnosed with leprosy (now called Hansen’s Disease) a mildly contagious, misunderstood and feared condition.  As a family we rarely spoke about Edmond, Norbert, Marie, Albert, or Amelie.  Only recently have any of us begun to talk openly about them.

The more we talk, the more we discover and the more questions we have.  We have a collection of letters from Norbert and Edmond as well as a few from Amelie and Marie, but questions still remain.  Our search has connected us with survivors of leprosy; families like ours searching for relatives; men and women who worked at the Carville facility.   All have stories and perhaps questions.

This website is a way to reach others with similar questions and stories or simply an interest in knowing more about the disease.  It offers a connection to other stories and information and invites participation from you the readers. Post your comments and stories, either signed or anonymous.  We only ask that comments be respectful.  Those with leprosy/Hansen’s disease have suffered long enough.  Let these pages be sources of enlightenment not more pain.     Paul Landry and Claire Manes


Leprosy - Chronicles
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My fondest and lasting friendships of my 34 years employment include my visits with Albert Landry in his room and our talks on the walk-ways. Our talks were all about New Iberia (my home town) and the Bayou Teche country.

Sam Wilson and Theresa were one of the most dignified couples I’ve ever known. I recall our many visits in his room and the lively discussions about Music and Civil Rights.  After informing him the Dr. Martin Luther King, Jr. was the guest speaker at my graduation at Talladega College (Talladega, AL), the conversations were endless. They were very knowledgeable about both subjects – we shared happy moments.
 
William Farrington, whom everyone referred to as, “Mr. Farrington” (including Dr. Margaret Brand), was a dignified gentleman, always riding his bicycle dressed in colorful slacks, shirt and tie and hat.

Zell Brown and her eagerness to share her expertise on the “loom” and the specially designed hand-cranked-wheel-chair with everyone she met was most enthusiastic.  No one was a stranger to her.

Joe McIntosh one of the most energetic tour guides as he shared life’s story as he provided guided tours at the Hospital.

Darryll Broussard and Louis Boudreaux were two of the most influential gentleman at Carville along with their charming wives Mary and Kitty (sisters).

Submitted by: Laddie Bolden, who began work as a Medical Technologists involved in patient care and laterbecame the  Program Analysts in the Regional HD Program responsible for monitoring the contractual medical care provided by the Out-Patient care facilities in: Seattle, San Francisco, Los Angeles, San Diego, Hawaii, Phoenix, Galveston, Chicago, Boston, New York, Miami, Puerto Rico and New Orleans.
I am so sorry to have missed your book signings here in New Orleans in recent months. I found out about them through Beth Fitzpatrick, O.Carm. I have since bought a copy from Barnes and Noble and read it with great interest and deep feeling. Prior to this I had read Miracle at Carville and the follow up book also.

What an amazing journey of discovery for you and your family. I am so pleased for you.

Submitted by: Brenda Lege
Your wonderful book was recommended to me by a friend.  It was one of the most powerful books that I've ever read, and I hated to finish it because I felt like I was saying goodbye to old friends! Your grandfather and the others at Carville were such inspiring and courageous people.  In spite of the horrible injustice that were inflicted upon them, they searched to find meaning in their lives. The support and friendship among the patients was so heart warming.  Thank you for sharing your wonderful family with all of us.

Anonymous
For Reflection
“Stigma shouldn’t be seen as residing in an individual with a disease, but it resides in the society that has not found a way to be inclusive.  We have a duty to diagnose and treat this stigma.”
John Manton, the International Association Global Project on the History of Leprosy.  (2007) in Disease by Mary Dobson
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I do have some experiences to share regarding the "fear" "misunderstanding" and "complete ignorance" about Hansen's Disease.
(1) I was there when the mail was being "sterilized"
(2) I recall Dr. Paul Fasal, a visiting Dermatologist who would employ patients during seminars as "training/teaching" models for Dermatology students. His method  of explaining and demonstrating that there is NO fear from this disease was truly innovative. From time to time in his examination of the patients and demonstrating to the students, Dr, Fasal would use a temple of his glasses and "point to AND scratch" various lesions and then place that same "temple used in the examination" into his mouth. Needless to say, this method shocked many students but the end-results were AMAZING and very educational. A very lasting teaching-tool.
(3) There were staff members who feared working with the patients. The above technique began to dispel much anxiety.
(4) There was tremendous compassion among most of staff. However, ignorance has always been a problem but with time, much has changed. Thank God!
(5) On a personal note, whenever I encounter any patients at the hospital, AND especially away in Baton Rouge, I would ALWAYS greet them openly with a very warm handshake for the men and warmly embrace the ladies. This was always my method of conveying my sincere concern and appreciation for our patients. At all times.
(6) Following the death of Dr. Martin Luther King, Jr. I established the "Carville Chorus" composed of Patients and Staff. We performed at our Annual Dr. Martin Luther King, Jr. Memorial Program; when Dr. Trautman received his last promotion and any special event. My lead tenors were Joe McIntosch and Max Gonzales. Other members were Ray and Julia Elwood, Henry (from Hawaii) and a blind patient (cannot recall his name) that we taught him his music, as well as the unique Oscar Conception. Our favorite and loyal fans were Theresa and Sam Wilson as well as Eric Cornelious and Mr. Farrington, (Everyone, including physicians called him "Mr.")

I hope this is not too lengthy, but I love to share thoughts about my "Carville Family." Love to all,

Travel Light,
Laddie Bolden
Out of the Shadow of Leprosy
Featured at Jeanerette Museum Talk

   The museum in Jeanerette, Louisiana, hosted a slide show and lecture by Claire Manes on the history of Carville, her book, Out of the Shadow of Leprosy, and her family’s Carville related story.  She discussed Carville’s story from the 1894 efforts to establish a place to treat leprosy patients to July 28, 2015, when the last two residents at Carville moved to a Baton Rouge facility. In relating the history of the hospital Claire recognized her grandfather Edmond Landry and his four siblings: Norbert, Marie, Albert and Amelie who were patients at the hospital at different times from 1919-1977. At the talk were James (Jimmy) Landry, one of Edmond’s grandsons, and Mazie Boudreaux Landry, Edmond’s only daughter in law.

   Claire also mentioned the Jeanerette connection to Carville.  The book The Miracle at Carville, the story of the effects of the first successful treatment for leprosy, was written by Betty Martin (her Carville name) whose maternal relatives were Jeanerette citizens.

   Check out the museum’s website for their hours of operation and a listing of other scheduled programs: www.jeanerettemuseum.com

Edmond Landry's grandson James Landry, his granddaughter Claire Manes and his daughter-in-law Mazie Boudreaux Landry are pictured at the Jeanerette Museum following the talk on Carville.
my talk at the Jeanerette museum,Jeanerette Museum following the talk on Carville.
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After meeting Claire in New Iberia last year, I added her book as a reference as well as the fiction book Moloka'i to my seniors reading list for literary circle work.  This first year, I had approximately 10 students read it...and they loved it.  Not only were they drawn into the characters' lives, they learned about a troubling time in our not-so-distant past that very few of them had any idea about.  It kept them engaged from start to finish, and the discussions they had in their lit circles were phenomenal.  Even more moving to me were the activities they chose to do from 'choice boards' that I gave them...so many showed an empathy for the victims of this disease that I did not see in them during other works of literature that we read.  Quite simply, they were touched by the story.  For next year, I have ordered 20 more books so that I can offer this choice to more students.  A big thank you to Claire not only for enlightening me on this era in our nation's history but for affecting my students as well!

Kim Hoffmeister
English dept chair
Marengo Community High School
Marengo, Illinois
For most of my life my grandfather was a mystery. We never spoke about this man who died in 1932 thirteen years before I was born. Happily his long hidden story is being told in my book, Out of the Shadow of Leprosy, and in a proposed documentary for Louisiana Public Broadcasting: Edmond Landry Carville Case # 300.

View the website www.carville300.com.  Share the story and contribute to its success if you care to.

Editor’s note: George Hampton worked in Carville as part of the United States Public Health staff from 1963-65 and then again from 1974-77.  In his second tour of service he worked with Dr. Paul Brand as Department Head of Orthotics and Prosthetics.  He recalls his period working with Dr. Brand as one of the most memorable of his career.  He shares here some of his recollections of Dr. Brand.  This vignette is part of George’s as yet unpublished manuscript, Remembering Carville. I regret never meeting Paul Brand or his wife as so many mention them fondly.  George’s vignette gives us an insight on Dr. Brand’s impact on HD care.

VIGNETTE SIX

PAUL WILSON BRAND: A LIFE WELL LIVED SERVING HD PATIENTS IN INDIA AND AMERICA

Twenty years older than me, Paul Brand was, internationally at least, part of that "greatest generation" that saved democracy when they prevailed in the Second World War and later tackled problems on the home-front with the same intensity. Born of missionary parents in Tamil Nadu, India in 1914, years later he completed medical training in London as the war began. Some of his surgical qualifications were earned while working as a trauma surgeon in the London Blitz.

After the war, Paul and Margaret Brand (they had met and married while in medical! school) returned to India to teach surgery and to practice at the Christian Medical College and Hospital in Vellore. He became a pioneer in the budding specialty of reconstructive hand and foot surgery. Margaret, an ophthalmologist, did eye surgery. Together they improved the lives of countless HD patients.

Many physicians treating HD in the 1940s and 50s in India and other countries, including some in the US, considered deformities, infections and loss of hands and feet to be a direct and inevitable result of the effects of the HD bacillus. After documenting loss of protective sensation in large numbers of patients, Dr. Brand realized the bacillus didn't "weaken" the tissue and lead directly to foot or hand infection and amputation. But It did damage some motor, sensory and autonomic peripheral nerves in the extremities.

A keen observer with a sharp, analytical mind, Dr. Brand saw that some of his patients did not experience skin damage and ultimate loss of digits, feet or hands. This led to his conclusion that it was the caregivers' failure to adequately protect the patient's skin from the stress of rubbing or friction that led to this loss, and just as important, the patient's failure to follow the caregivers' directions. These observations revealed that achieving long-term benefits from reconstructive surgery required surgeons, nurses, PTs, OTs, Orthoptists, Prosthetists and patients to work closely as a team to overcome the loss of protective sensation and prevent amputations.

Numerous awards for his outstanding achievements and contributions to professional and lay literature were given to Dr. Brand. The most unusual one came in 1961 when Queen Elizabeth II knighted him a CBE (Commander of the British Empire) and bestowed the title of Sir Paul Brand in recognition of his promotion of good relations between the Republic of India and Great Britain. A gifted but humble man, Dr. Brand inspired me to do my best. He continued his service at Carville after I left. Nine years later he retired from his position as Rehabilitation Branch Chief and senior surgeon. He and Margaret lived in Seattle near children and grandchildren until his death in 2003. My dose professional association and friendship with Dr. Brand was one of the most rewarding times of my life. It was the first and only time my boss had been knighted by the Queen of England. The reader is encouraged to look online or in the library for additional information about this remarkable man.