Copyright ©2019 Jean Mayer Fogelberg & Leslie Mayer Holder

Links & Resources

 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 Hawaii 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

 

The International Association for Integration, Dignity and Economic Advancement (IDEA), 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 challenges. 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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