Lupus Trust of New Zealand - A History of Systemic Lupus Erythematosus

DATE	DESCRIPTION
400 B.C.	Hippocrates writes about red ulcerating skin lesions which may or may not be connected with Lupus.
About 1200 A.D.	The term Lupus is used for the first time to describe red ulcerations on the face. The word Lupus literally means wolf and there are two theories as to why it was used.
	(1) The most common theory is that the skin rash, like a wolf, seemed to eat away the skin and destroy it. The rash, therefore, was said to resemble skin which had actually been bitten by a wolf; and
	(2) The frightening appearance of some Lupus sufferers put people in mind of werewolves. These were seen as human who had magical power to transform themselves into animals. The rash therefore, was said to make people’s faces resemble the face of a wolf and in the superstitious middle ages, that meant werewolves.
About 1800 A.D.	Dr. Willan, a British Dermatologist, includes Lupus in his classification of skin diseases. His description of Lupus emphasised the destructive nature of the disease and the lack of any treatment. At this time he was probably describing tuberculosis of the skin which is still known as Lupus Vulgaris rather than Lupus Erythematosus. Later in the 19th century, Cazenare, a student of French Dermatologist Blett, introduces the term Lupus Erythematosus and confirms that this is distinct from other ulcerating skin.
1875	Kaposi, a Viennese physician, recognises that Lupus Erythematosus can produce dangerous constitutional symptoms as well as skin rashes. He is acknowledged to be the first person to describe Systemic Lupus Erythematosus and also the first to describe the butterfly rash on the Lupus sufferer’s face.
1885-1903/4	Sir William Osler, in a series of papers, expands the concept of SLE and describes heart, lung, joint, brain, kidney and stomach symptoms. He also recognises that some cases of SLE occur without skin involvement.
1920s and 1930s	Pathologists working at Mt. Sinai Hospital in New York describe a number of symptoms unique to SLE e.g. heart involvement known as Libman - Sacko endocarditis, a kidney lesion known as the wire loop and the hemotoxylin body. Also the term collagen disease is used by Dr Klemperer for the first time.
1922	The false positive test for syphilis is recognised as a reasonably common finding in SLE. (It is known that about 30% of SLE patients have a false positive Wasserman Test - this does not mean these people have venereal disease.)
1948	The LE phenomenon is refined by Dr. Hargraves at the Mayo Clinic and quickly becomes the basis for diagnosing SLE. This cell is essentially a white blood cell which has engulfed the nucleus of another cell. SLE can now be recognised in milder and milder forms and the LE cell discovery is the first clear sign that SLE could be an autoimmune disease.
1950s	Florescent tests to detect antibodies against the nucleus of cells are developed. Referred to as anti-nuclear antibody tests (ANA), 95% of SLE patients are known to be positive. Corticosteroids are used for the first time to control symptoms of SLE.
1959	At Otago Medical School the NZ Brown X NZ White hybrid mouse is discovered to develop a lethal kidney disease closely resembling Lupus Nephritis - the kidney disease which some people with SLE develop. This mouse has since been studied in laboratories all around the world. Other mice which develop Lupus-like diseases have also been bred, particularly in the United States. These mice have aided research tremendously.
1960s	The prognosis for Lupus sufferers improves dramatically as diagnosis improves, drugs are used more sensitively and public awareness begins to develop.
1970s	The Lupus Foundation of America assists groups around the world to come together in support of Lupus sufferers and their families. Their primary task is to educate sufferers, the public and health professionals about Lupus.
1979	The Lupus Association of NZ is founded by David Swindells. The prognosis of Lupus sufferers has improved to such an extent that over 98% of people survive the first five years after diagnosis. That means that more and more people are leading very normal lives …. A far cry from wolf bites and werewolves…and so to the present day.
1981	Heather Bartlett (Craig). Heather was diagnosed with Lupus in 1980 and not being aware that David had founded The Lupus Association of NZ (not registered) she contacted the Arthritis Foundation. Heather said she was very lucky to come under the care of Dr Bob Grigor, sadly now deceased, he encouraged her to set up a group, the venue was at her home in Mountain Rd, Epsom Auckland. Dr Grigor told Heather about another patient of his, David Swindells who was trying to organize a nation wide association. David and Heather's combined efforts made a very good team. Heather pays tribute to her own mother and David's wife for the enormous amount of support and help they received from them. Heather said "no attempt was made to form a committee as no one else seemed keen to participate at that level and that they both seemed to be able to manage".
1984	Dr Grigor was the speaker at their meeting. They had such a huge turnout of people it was obvious that the group was just becoming too big for "at home" meetings , it was decided that the meetings would be held at the Arthritis Foundation. They had about 90 members on their mailing list at this time. In 1988 Heather moved to the UK.
1989	Nick Purvis takes over as coordinator from David Swindells. The Group David established says Nick, "was primarily support, contact, advice, information and above all tried to be that link that's so often seems missing in confused, troubled or worried lives and times.
1993	By late 1993 Nick's health meant that the Group went into recess and Lupus people were again left without organised support.
1995	Durelle Dean held a meeting at St Luke Community Centre in Remuera Road Auckland, she was assisted by Pam Antill of the Arthritis Foundation. This was the first meeting to re-establish a new Lupus Support Group, it attracted 46 interested people. Durelle moved out of the area in 1996.
1996	Angela Walters becomes Chairperson.
1998	This was a year of major change for the Lupus Group. In June, this ambitious fledgling left the warmth and security of the Arthritis Foundation's nest, eager to test its brand new wings. Tentatively at first, but soon learning to soar and sweep into a new era - with the new name of Lupus Auckland.
1999-2000	Saw the formation of three separate Districts. First came South Auckland (now known as Counties Manukau) then North Auckland and finally West Auckland. The Auckland Central Group went into recess until a convener/coordinator could be appointed.
2000	Angela Walters hands over the Chairperson position to Lorraine Cox, Pam Stewart - Vice Chairperson, Linda Stuckey - Secretary and Glenda Walkden - Treasurer. The serving committee became the inaugural Board of Lupus Auckland.
2001	Throughout the year the Board focused on organising the formation of a Charitable Trust.
2002	Registration of the "Lupus Trust of New Zealand", a new name for a new millennium. The seven Trustees comprise, Lorraine Cox, Pam Stewart, Linda Stuckey, Glenda Walkden, Helen Clarke, Ann Connelly and Louise Langereis. From humble beginnings of 46 people in 1995 we have grown to a very active membership well in excess of 330. We now include in our aims and goals the need to raise awareness of SLE within the wider community, with the hope of greater understanding for our members in their daily battle. To help achieve this we have appointed our first Publicity Officer, Beverly Lowe. We continue to strive on your behalf. May 2002: The Trust completed its own patchwork quilt with squares made by members and friends from around the country. The quilt was assembled by Bobbie Douglas Cooke from North Shore. August 2002: Auckland City support group reactivated with Pat Fisher as convenor but folded again in 2005.
2003	Feb 2003: Lorraine Cox resigns as Chairperson and Pat Fisher appointed. Pat is also editor of the Trust News. May 2003: Students at Whitecliffe College of Art and Design enter a competition to design a logo for the Trust. The design winner was presented with a cheque at the combined districts meeting. Sept 2003: New brochure printed for distribution to doctors and specialists etc.
2004	June 2004: First seminar held in Leicester Hall, Ellerslie. Speakers were Dr Norah Lynch, Dr Robin Kelly and Tania Clifton-Smith. May 10 2004: Inaugural World Lupus Day. Sept 2004: Hamilton Support Group formed with Alvin Cheng as Convenor. Due to lack of support it was decided not to carry on after 1 year.
2005	July 2005: Seminar at Ellerslie War Memorial Hall. Speakers were Dr Raoul Stuart and Dr John Collins. Nov 2005: Helensville Support Group formed but folded after 1 year due to illness and lack of support.
2006	July 2006: Seminar held at Ellerslie War Memorial Hall. Speakers were Dr Denesh Patel, Julie Karsop, Inga von Benzon, and Tony Lipanovic.
2007	April 2007: Pat Fisher resigns as Chairperson and Louise Langereis is appointed. May 2007: The Trust loses a very good friend with the death of Pam Stewart. Pam was a founding member of Lupus Auckland and the Lupus Trust of New Zealand. June 2007: New Trustee Judy Wall takes up position of Trust News editor. August 2007: Glenda Walkden resigns as Treasurer and Kathy Chan is appointed.
2008	February 2008: Kathy Chan resigns as Treasurer due to ill health. March 2008: Judy Wall resigns from the Trust due to ill health May 2008: New Trustee Leslee Porteous takes up the position of Treasurer. July 2008: New Trustee, Diana Coker, joins the Lupus Trust of New Zealand.
2009	June 2009: Linda Stuckey resigns as Secretary/Trustee and Diana Coker is appointed. Diane Barker resigns as Trustee. Both Diane & Linda continue to run the North Shore Support Group