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As the internet continues to grow and evolve, a wealth of information
about Kalaupapa and Hansen's disease/leprosy is emerging. What
you'll find here:
FAQ's about Hansens's disease (leprosy)
Books used for research for this website
Hawaiian Ancestry Resources
Kalaupapa 'Ohana (Family) websites
Articles, Organizations, and Information on the Internet
Frequently
asked questions about Hansen's disease (leprosy)
What is leprosy?
Leprosy is a chronic, infectious disease caused by a germ, Mycobacterium
leprae. It usually involves the nerves, skin and eyes.
Is leprosy infectious?
Yes, when untreated. However, even the most contagious patient
becomes non-infectious within a few days or weeks of treatment.
In addition, very few persons exposed to untreated patients contract
the disease because only about five percent of the world's population
is even susceptible to it.
Is leprosy hereditary?
No, however some scientists feel that susceptibility to the disease
may be inherited.
How is Leprosy transmitted?
Leprosy is transmitted by direct, person-to-person contact, usually
repetitive, over a prolonged period of time.
What are the symptoms?
Early symptoms include reddish or pale colored skin patches that
may have a loss of feeling; bumps and thickening of the skin;
loss of feeling of the hands or feet.
How many people have leprosy?
In 2000, 738,284 cases of leprosy were identified worldwide; 91
in the United States. Between 1 million and 2 million people are
believed permanently disabled by the disease. Ten countries account
for 90 percent of cases: Brazil, Democratic Republic of the Congo,Guinea,
India, Indonesia, Madagascar, Mozambique, Myanmar, Nepal and Tanzania.
Do fingers and toes "fall off"?
No. As a result of nerve and blood vessel changes, bones in the
hands and feet shrink, leaving them markedly deformed but this
does not occur when a patient is under treatment. The damage may
be aggravated by un-cared for injuries that occur because of the
loss of feeling in hands and feet.
Do persons with leprosy need to be isolated?
No. Mild cases are generally not infectious and the more severe
cases become non-infectious within a few days or weeks of treatment.
All newly diagnosed cases are treated as outpatients.
How is it treated?
Since the mid-1940's, the sulfone drugs have been used in the
treatment of leprosy and the majority of persons who take their
medicine regularly are cured.
Treatment during the early stages averts disability. A multi-drug
therapy - consisting of three drugs (dapsone, rifampicin and clofazimine)
- kills the pathogen. Relapses are rare for patients in the United
States who receive multi-drug therapy, which can take six months
to two years.
What is the correct terminology for the disease?
Hansen's Disease is the official term in Hawaii and also advocated
by the National Hansen's Disease Center in Carville, Louisiana.
However, the term "leprosy" is used throughout most
of the world. The question of terminology is widely debated, proponents
of each term citing a number of reasons for their preference.
However, it is universally agreed that the term "leper"
is totally inappropriate and should not be used. Dictionary definitions
of the word "leper" include the adjectives "immoral"
and "unclean". Persons with leprosy are neither of these
things.
Books
Used For Research
A Brief World History Of Leprosy by A. Mouritz
The Samaritans of Molokai by Charles J. Dutton
Kalaupapa ~ a Portrait - Photographs by Wayne Levin,
Text by Anwei Law
Olivia - My LIfe of Exile in Kalaupapa by Olivia Robello
Breitha
Home Country by Ernie Pyle
The Lands of Father Damien by James H. Brocker
Yesterday at Kalaupapa by Emmett Cahill
Under The Cliffs of Molokai by Emma Warren Gibson
Hawaiian
Ancestry Resources
The US GenWeb Project ~ Keeping Internet Genealogy Free
Welcome to The USGenWeb Project! We are a group of volunteers
working together to provide Internet websites for genealogical
research in every county and every state of the United States.
This Project is non-commercial and fully committed to free access
for everyone.
View the GenWeb 1920 Federal Census for Kalawao County
Island of Molokai, Kalaupapa Leprosy Settlement
The USGenWeb Archives provide genealogical
and historical data to the general public without fee or charge
of any kind. It is intended that this material not be used in
a commercial manner. All submissions become part of the permanent
collection. Abstracted by Osiris Johnson, July 2000 from public
records. Edited and formatted by Maggie Stewart, February 2001.
Submitted by Osiris Johnson July 13, 2000. This Census Was Proofread
by Maggie Stewart, February 2001.
Part 1 / Pages 1-A through 4-A
Part
2 / Pages 4-B through 8-A
Part
3 / Pages 8-B through 11-B
Part
4 / Pages 12-A through 14-B
Hawaiian Roots
"Aloha Kakou! Komo Mai and Welcome to Hawaiian Roots. This
website is intended to help those people with Native Hawaiian
Ancestry of pure or part aboriginal blood learn
more about their 'Ohana (family). However, this website
could also be helpful to anyone with Hawaii ties. Through
this website, I hope that each of you will share what you know
of your genealogy in the Message Boards in hopes of finding connections
with others and closing gaps in your own genealogy."
The Hawaiian Historical Society
"Founded in 1892, the Society is dedicated to preserving
historical materials relating to Hawai‘i and the Pacific
region and to publishing scholarly research on Hawaiian and Pacific
history. In addition, the Society presents lectures and other
programs, free to the public, on various aspects of Hawaiian history.
Ancestral Findings.com
"The most popular free genealogy lookupsite."
Contains links to lots and lots of genealogy databases
worldwide.
Ancestry.com
"The largest collection of family history records on the
Web."
To access some records you must join and pay a fee. You can pay
for only certain kinds of records, such as census records, or
for full access to everything they have. You can join for only
three months if you want. You can sign up to have them e-mail
you if anything new comes in about your relative or family name.
A great resource, and one I have used frequently.
Family Search.org
The Library of The Church of Jesus Christ of Latter-day Saints.
The library's major holdings of Hawaii records include census,
genealogy, land, probate, and vital records.
Department of Health, Office of Health Status Monitoring
1250 Punchbowl St. Honolulu, HI, 96813
www.hawaii.gov/doh/records/index.html
This office receives and preserves vital records (birth, death,
marriage and divorce certificates) for events that occurred in
Hawaii. The DOH maintains vital records that date back to 1841.
State of Hawaii Archives
Iolani Palace Grounds, Kekauluohi Bldg.
Honolulu, HI 96813
808-586-0329
The State Archives collection includes a wide variety of 19th
century government records. Documents that may be useful include
birth records, individual census records, church records, court
documents, death records, immigration records, land records, marriage
records, military records, change of names records, naturalization
records, Chinese entry permits and taxes. Many of the records
provide information including names, birth dates, place of residence,
citizenship, military service and former names – any of
which may lead to other valuable family information.
Bureau of Conveyances
1151 Punchbowl St.
Honolulu, HI. 96813
808-587-0148
The Bureau of Conveyances has records of land titles and related
documents, as well as maps from 1845 to the present. The information
you find varies from record to record, but may include the name
of the seller (grantor), the name of the buyer (grantee), the
date and place of the land transaction, size of the piece of land
being granted, price of the piece of land, and where the grantee
(buyer) came from.
Hawaii State Library
478 South King St.
Honolulu, HI 16813
808-586-3535
Microfilm copies of selected vital records and indexes are available
in the Hawaii and Pacific Collection at the main branch of the
Hawaii State Library, located at 478 South King St. in Honolulu.
Call for further information. They also have microfilm available
of old newspapers and the U.S. Census for 1900, 1910, and 1920.
Hamilton Library
University of Hawaii at Manoa
2250 The Mall
Honolulu, HI 96822
808-948-8264
The Hawaiian/Pacific Collections at UH Manoa’s Hamilton
Library contain copies of selected birth records occurring between
1896 and 1909, the U.S. Census for 1900, 1910, and 1920, indexes
to the cemeteries of Oahu and Maui county and microfiche of local
newspapers.
Kalaupapa
'Ohana
"Emma's Heart"
"Aloha and welcome to the Gasper-Kealawaiole website.
This website was created with the hope that our 'ohana (family)
at home and abroad, as well as our visitors, would have a 'meeting
place' to connect, communicate and share their Filipino and Hawaiian
heritage."
http://www.gasper-kealawaiole.net/
Organizations,
Websites, and Articles on the Web
IDEA
"IDEA, the International Association for Integration, Dignity
and Economic Advancement, is the first international organization
to have its leadership primarily made up of individuals who have
themselves personally faced the challenges of leprosy, officially
called Hansen's Disease in many parts of the world."
http://www.idealeprosydignity.org/
Global
Alliance for the Elimination of Leprosy
The
key force in the leprosy elimination effort is the Global Alliance
for the Elimination of Leprosy. Currently chaired by India, it
is spearheaded by the national programmes of major endemic countries,
WHO, The
Nippon Foundation, the International
Federation of Anti-Leprosy Associations (ILEP), Novartis
and the Novartis Foundation for Sustainable Development, Danish
International Development Assistance (DANIDA) and the World
Bank. Created in 1999, this formal Alliance was the natural
successor of a little known, but highly effective, partnership
actively fighting the disease over the last decade.
Global
Project on the History of Leprosy
"The Project is developing a database of leprosy archives
around the world, as a working tool for researchers who are interested
in the modern history of leprosy, dating from 1847, when Danielssen
and Boeck published Om Spedalskhed. It will also be of interest
to those connected with leprosy and its impact."
http://www.leprosyhistory.org/english/englishhome.htm
"Alice
Ball: Honor For The Healer"
"Alice Augusta Ball was a list of firsts: the first
and only woman to earn a master's degree at the College of Hawaii,
the first woman to be a chemistry instructor there and, most importantly,
the first person to extract a chemical that led to a treatment
for leprosy. Incredibly, her achievements in the early 1900s were
virtually forgotten -- until a federal retiree named Stan Ali
stumbled upon a reference to her three years ago while researching
African Americans in Hawaii."
http://starbulletin.com/2000/02/18/news/story3.html#jump
"Kalaupapa serves as a reminder of a nation in crisis, when
Hawaiian people were dying from introduced diseases for which
they had no immunities. Options for preventing the spread of contagious
diseases were few. Isolation for leprosy seemed like the best
solution, but it came at a high personal cost. Aloha.
The National Park Service invites you to learn more about this
special place."
http://www.nps.gov/kala/docs/story.htm
"Nun to be beatified on May 15"
"May 15 will be a blessed day for Mother Marianne Cope, the
Franciscan nun whose work at the Hansen's disease colony at Kalaupapa
has her on track to be the first woman with Hawai'i ties to become
a saint, but it doesn't leave her fans too much time to plan a
celebration."
http://the.honoluluadvertiser.com/article/2005/Feb/24/ln/ln34p.html
"Mother
Marianne’s Remains Unearthed"
Archaeologists uncovered the skull of Mother Marianne Cope yesterday,
more than 6 feet deep in the Kalaupapa grave where she was laid
85 years ago.....Cope will be beatified by the Catholic Church
later this year -- the second of three steps to sainthood -- for
her work with leprosy patients who were banished to the remote
Molokai peninsula after the disease became epidemic in the islands.
She died in 1918 after 30 years in Kalaupapa.
http://starbulletin.com/2005/01/25/news/story6.html
"Kalaupapa's
Vanishing Faces"
"Between
the tears and memories of hundreds of funerals, Paul Harada finds
some comfort in the feeling that his dead friends and neighbors
are now free. "In fact, I think these are the lucky ones
-- they're not going to suffer any more," he said."
http://starbulletin.com/2003/03/30/news/story6.html
Foreign
Bodies: SARS, Leprosy and Constructions of Race
From an encore lecture by Nancy Riley,
associate professor of sociology at Bowdoin college.
..."I argue that it serves us well to look at fear of disease.
We might think of disease as just disease, and our fear as something
that makes sense in light of the dangers of disease. In some ways,
that's true. It's easy to understand the fear of a disease as
unknown as SARS or as disfiguring as leprosy. But fear is constructed
differently depending on the social context, so not all fear is
the same. For that reason, it's useful to look at how leprosy
and SARS came to be defined in a particular way at a particular
time, in a particular place. Fear often magnifies what we think
about something, and so it makes it possible to see things that
might not otherwise be visible."
http://www.bowdoin.edu/news/archives/1bowdoincampus/001331.shtml
Forum
2000 - Bridging Global Gaps
From
a speech by Yohei Sasakawa, President of the Nippon Foundation,
2003
"Even today in the twenty-first century we are faced by very
real ongoing chal-
lenges. I am specifically thinking of the following two issues:
first, leprosy
continues to be a health problem, especially in the developing
countries of
Asia and Africa. Every year several hundred thousand new individuals
are
diagnosed with leprosy. Since there is now an effective cure,
it is a global
responsibility to provide treatment in a timely enough manner
that deformity
and disability do not occur. Then we will be able to separate
ourselves from
the long history of discrimination and exclusion."
http://www.forum2000.cz/conferences/2001/transcripts.php?id=121
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