2014 Annual Report - Lupus Foundation of Southern Arizona

4602 E. Grant Rd
Tucson, Arizona 85712
520-622-9006
www.lupus-az.org
Lupus Foundation of Southern Arizona, Inc.
2014
Annual Report
Lupus
Systemic
Lupus Erythematosus is an autoimmune disease in which the immune system
produces antibodies to cells within the body leading to widespread inflammation and tissue damage. The causes of SLE are unknown but are believed to be linked to genetic, environmental, and
hormonal factors. SLE may be characterized by periods of illness and remissions. SLE has a variety
of clinical manifestations and can affect joints, skin, brain, lungs, kidneys, and blood vessels. People
with SLE may experience fatigue, pain or swelling in joints, skin rashes and fevers. A team approach
in treating lupus is often warranted due to the number of organ systems involved.
Lupus is a autoimmune disease with a wide array of clinical manifestations such as rash, photosensitivity, oral ulcers,
arthritis, pleuritis, pericarditis, kidney problems, seizures and psychosis and blood cell abnormalities. Patients can
have symptoms and signs of lupus along with other immune system diseases (mixed connective tissue disease.)
Statistics show that systemic lupus is primarily a disease of young women during their childbearing years. However,
lupus can occur from infancy to old age with peak occurrence between ages of 15 and 40; neonatal lupus occurs as a
result of passively acquired auto-antibodies from a mother with lupus.
According to the Center for Disease Control, lupus is three times more common in black women than in white women.
It is also more common in women of Hispanic/Latina, Asian and American Indian descent. Hispanic/Latina and Black
women tend to develop symptoms at an earlier age than other women.
Patients with lupus have an increased frequency of related autoimmune problems such as Sjogren’s syndrome
(i.e., dry eyes, dry mouth) and antiphospholipid syndrome (i.e., clotting problems, strokes, fetal loss), that require
additional treatments. Accelerated atherosclerosis is a newly recognized phenomenon responsible for premature
mortality.
Diagnosis can be very difficult. The American College of Rheumatology (ACR) uses a standard classification requiring
4 of 11 criteria for diagnosis, although this is recognized to miss early and mild cases. Even so, there is underdiagnosis
because the presenting symptoms and signs are often not specific; and over-diagnosis because doctors mistakenly use
a positive blood test (present in 5% of the healthy population) by itself, to make a diagnosis.
Treatment consists primarily of immunosuppressive drugs such as hydroxychloroquine (Plaquenil) and corticosteroids
(prednisone). In 2011 the FDA approved the first new drug for lupus in more than 50 years—belimumab (BENLYSTA®).
Since lupus is highly individualized, and no two cases are exactly alike, the treatment also varies depending on the
symptoms and needs of the patient. Lupus is usually treated by a rheumatologist who specializes in treating diseases
that affect the joints and muscles.
Prevalence of lupus ranges as high as 1,500,000 in the United States. A recent study estimated a 2005 prevalence of
161,000 with definite SLE and 322,000 with definite or probable SLE. Among rheumatic conditions, lupus has a high
mortality rate—14.5% of all rheumatic disease mortality in 1997. At the same time survival has been improving,
suggesting that more or milder cases are being recognized.
To address the multi-dimensional needs of people with lupus physicians and primary health professionals need to be
able to recognize the disease early; the public needs to be better educated about symptoms and treatment; and
funding needs to be directed for medical research on lupus.
Lupus Foundation of Southern Arizona, Inc.
Mission Statement
The purpose of the Foundation is to:
·
Provide support, resources, referral and encouragement to lupus patients
and families information
·
Promote the development and enhancement of health and social welfare
services at the local level to assist individuals suffering from lupus
·
Promote public education to increase knowledge and understanding of
the disease and its ramifications
·
Encourage and support research programs related to the diagnosis,
treatment, cure and prevention of lupus
·
Promote the exchange of information among health professionals and
collaborate with the professional community to improve the standards of
diagnosis, care and treatment of those affected by lupus
HUMAN HEALTH AND WELFARE SERVICES
PROVIDED BY THE
LUPUS FOUNDATION OF SOUTHERN ARIZONA, INC.
COUNTIES SERVED:
Cochise
Graham
Pima
Pinal
Santa Cruz
PUBLIC AWARENESS & INFORMATION
During 2014 the Lupus Foundation presented onsite Health Fair and Education Tables throughout the
city including the University of Arizona Arthritis Living Healthy Fair, Tucson Estates Health & Education
Fair, Arthritis Foundation Expo, Saddlebrook Community Health Fair and the Armory Park Health Fair.
Additionally, to educate and encourage support for the work of the Foundation, Health Fairs were held
for City, State and Federal Employees. Our Green Valley members benefitted by visiting our table at the
Green Valley Community Center and learning about our resources.
Lupus Newsletters were sent to 79 hospitals, clinics and rheumatologists. Additionally lupus information
was sent to 60 public schools and public libraries in Tucson and surrounding communities. The Lupus
website, www.lupus-az.org provided details about lupus and our services.
Apple Annie’s Orchard in Wilcox promoted the Lupus Foundation and its mission at the Orchard as well
as adopting the Foundation as one of its annual charities.
The Tucson Plush Club passed out lupus information packets to its guest during a fundraiser, A Phoenix
Arizona concert distributed lupus literature and donated proceeds to the Foundation as well.
KGUN 9 television interviewed lupus staff on The Morning Blend promoting the Foundation’s mission
and services; COMCAST, KVOA and the Journal Broadcasting Company highlighted lupus, the difficulty in
diagnosis as well as the resources provided at the Foundation, for several months on television by way
of videos and radio broadcasts.
At the site of The 2014 Annual Lupus Walkathon held at Reid Park walkers and guests were able to ask
questions about lupus and pick up information about the Foundation, lupus research and our services. In
addition to television and radio, this event was promoted by the Arizona Daily Star, U of A Wildcats
Newsletter, online and Facebook.
PATIENT EDUCATION & SUPPORT
Lupus Quarterly Newsletters
Newsletter Distribution
The Foundation produced
and distributed Lupus News
to 343 lupus patients each
quarter of 2014, providing
information on current
research, new medications
and clinical drug trials.
The Lupus Annual Meeting Luncheon has continued to host guest speakers who provide
information on lupus research, alternative lupus treatments, and Arizona assistance programs
for lupus patients and their families. This is an opportunity for our members to ask questions
about lupus and current research as well as become involved in fundraising events, and join
lupus support groups
During 2014, The Foundation provided Emergency Medical Funds to cover the cost of monthly
medication for 1 southern Arizona lupus patient and to cover the physician visit expense for a
lupus patient unable to afford the procedure.
During this fiscal year, 11 patient Support Groups were held in Tucson and 8 patient Support
Groups were held in the Douglas, Arizona area. Support Facilitator Helen Butler, RN arranged
educational speakers including home health care, pharmacy, nutrition wellness, and
Medicare representatives. The Lupus Self-Help Course material was provided for three lupus
patients without cost. This year bi-lingual Support Groups were made available and our
after-hours bi-lingual staff assisted 12 lupus patients.
165 lupus inquiries were made during the year and 287 lupus information packets were
mailed, including packets to public schools for specific student families, and local hospitals for
specific lupus patients. There were 33 lupus patients referred to physicians, and 116 lupus
patients provided resource information for housing, medication, and social security disability
counseling. This fiscal year, two Native American reservations were provided with lupus
information for newly diagnosed patients.
The Lupus website www.lupus-az.org provided basic lupus information, a current list of the
Foundation’s resources and an ongoing lupus calendar of events for the community.
The Foundation is grateful for the 4,012 hours of time donated by over 90 volunteers along
with our volunteer Board, this fiscal year to help us meet our Mission Statement.
Lupus Foundation of Southern Arizona, Inc.
Fiscal Year 2014 Board Roster
Board of Directors
Board Officers:
President
Joni Broussard, Personal Trust Administration, Northern Trust Bank
Vice-President
Patty Powell, Occupational Therapist, Amphi School District
Treasurer
Jeanie Moga, Vice President & Sr. Banking Officer, Northern Trust Bank
Secretary
Julie Gates, Public School Teacher, Amphi School District
Co-Secretary
Jill Schneden, Registered Nurse, U of A
Board Members:
Dr. Miranda Adelman, Research Assistant Professor, Arizona Arthritis Center
Lani Baker, MBA, CPA Finance Manager for Holualoa Companies
Carolina Hinds, Student, Pima College
Ricardo Hinds, Project Manager, Molex Inc.
Carlotta Flores, Owner El Charro Restaurant
Rebecca Shields, MBA, CS, Director Corporate Philanthropy, Finley Distributing Co., LLC
Why A Butterfly?
The butterfly has long been the symbol of lupus because in
many individuals early onset lupus manifests in a facial rash
that extends across the face in the shape of a butterfly. The
appearance is somewhat similar to a butterfly in that the
wings are covering the cheeks, and the body extends down
the bridge of the nose. The butterfly rash is not a condition
but rather a symptom of other underlying disease that may
or may not be serious or life-threatening.
www.lupus-az.org
4602 E. Grant Road Tucson, Arizona 85712 Ph. 520-622-9006 Toll-Free
E-mail [email protected]
1-877-822-9006