Lupus is a chronic autoimmune disease that can damage any part of the body. It occurs when the immune system attacks healthy tissues. Some key facts about lupus are that it affects mostly women of childbearing age, it can range from mild to life-threatening, and its symptoms include fatigue, joint pain, and rashes. Lupus is unpredictable, causing flares when symptoms worsen and remissions when they improve. Caregivers play an important role by educating themselves about the disease, communicating with doctors, and preparing for unpredictability through contingency planning.

1. The Cruel Mystery of
Lupus

2. Do you
or a love one
suffer from
the effects
of Lupus
If so watch this Power Point?

3. Anyone of these people could have
Lupus and you would never know it.

4. What is Lupus
 Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body).
Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.
 In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs
("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these
invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy
tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause
inflammation, pain, and damage in various parts of the body.
 Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).
 These are some additional facts about lupus that you should know:
 Lupus is not contagious, not even through sexual contact. You cannot "catch" lupus from someone or "give" lupus to someone.
 Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into
surrounding tissues. Lupus is an autoimmune disease, as described above.
 Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS
the immune system is underactive; in lupus, the immune system is overactive.
 Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with
lupus can lead a full life.
 Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no
large-scale studies to show the actual number of people in the U.S. living with lupus.
 More than 16,000 new cases of lupus are reported annually across the country.
 It is believed that 5 million people throughout the world have a form of lupus.
 Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too. Most
people will develop lupus between the ages of 15-44.
 Women of color are two to three times more likely to develop lupus than Caucasians.
 People of all races and ethnic groups can develop lupus.

5. What are the symptoms of Lupus
 Because lupus can affect so many different organs, a wide range of symptoms can occur. These symptoms may
come and go, and different symptoms may appear at different times during the course of the disease.
 The most common symptoms of lupus, which are the same for females and males, are:
 Extreme fatigue (tiredness)
 Headaches
 Painful or swollen joints
 Fever
 Anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
 Swelling (edema) in feet, legs, hands, and/or around eyes
 Pain in chest on deep breathing (pleurisy)
 Butterfly-shaped rash across cheeks and nose
 Sun- or light-sensitivity (photosensitivity)
 Hair loss
 Abnormal blood clotting
 Fingers turning white and/or blue when cold (Raynaud’s phenomenon)
 Mouth or nose ulcers
 Many of these symptoms occur in other illnesses. In fact, lupus is sometimes called "the great imitator" because its symptoms
are often like the symptoms of rheumatoid arthritis, blood disorders, fibromyalgia, diabetes, thyroid problems,
Lyme disease, and a number of heart, lung, muscle, and bone diseases.
 You play an important role in helping your doctor manage your disease. Listen to your body, ask questions and stay involved.

6. What happens in autoimmune diseases
Like Lupus
 In lupus, something goes wrong with the immune system, which is the part of
the body that fights off viruses, bacteria, and germs (“foreign invaders,” like
the flu).
 Normally our immune system produces proteins called antibodies that protect
the body from these invaders. Autoimmune means your immune system
cannot tell the difference between these foreign invaders and your body’s
healthy tissues (“auto” means “self”) and creates autoantibodies that attack
and destroy healthy tissue. These autoantibodies cause inflammation, pain,
and damage in various parts of the body.
 Lupus is also a disease of flares (the symptoms worsen and you feel ill) and
remissions (the symptoms improve and you feel better)

7. Lupus Criteria
If you have at least four of the criteria on the list, either at the present time or at some time in
the past, there is a strong chance that you have lupus.
 Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
 Discoid rash – a rash that appears as red, raised, disk-shaped patches
 Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
 Oral ulcers – sores appearing in the mouth
 Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not
become destroyed
 Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around
the heart that causes chest pain which is worse with deep breathing (pericarditis)
 Kidney disorder – persistent protein or cellular casts in the urine
 Neurological disorder – seizures or psychosis
 Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count),
lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
 Immunologic disorder –anti-DNA or anti-Sm or positive antiphospholipid antibodies
 Abnormal antinuclear antibody (ANA)

8. How can I handle the fatigue?
 As many as 80 percent of people with lupus experience fatigue. For some people
with lupus, fatigue is their main symptom. Fatigue can be debilitating, even to the
point of forcing them to stop working.
 It is unclear why extreme fatigue occurs in so many people with lupus, but the
following appear to play a role:
 Disease activity
 Pain
 Age
 Current medications
 Poor physical and mental health
 Lack of good social support
 Poor coping strategies, feelings of helplessness, depression or anxiety, smoking, and
lack of exercise can also be related to lupus fatigue. Before a physician can
conclude that fatigue is related to these factors, he or she will rule out any
"treatable" causes of fatigue such as anemia, kidney failure, or hypothyroidism.

9. How can I handle the fatigue continued
 Physicians experienced with lupus recognize the harmful and even destructive
effects that extreme fatigue can have, and research is underway to learn
more about how to treat the problem. Getting regular exercise and being part
of a support group can help.
 By making some adjustments, people with lupus-related fatigue will be less
likely to push themselves to exhaustion.
 Tips to Help You Manage Fatigue
 Alternate activities with periods of rest throughout the day.
 Establish good sleep patterns.
 Plan ahead; for example, shop for gifts throughout the year.
 Prepare meals in advance.
 Eat a healthy diet and exercise regularly.
 If you smoke, stop.
 Rest

10. As a caregiver, how do I handle
the unpredictability of lupus?
 Lupus is a disease of flare and remission, meaning that disease may be active one day and quiet
the next. Usually flares last more than a day, and usually an increase in medication dose, or a
change of medication, will be necessary to suppress the symptoms.
 Due to the unpredictable nature of lupus you may need to adjust your responsibilities and
priorities at times. Neither you nor your loved one with lupus should feel guilty about these
disruptions to activities that you cannot control, but it is important to find strategies to cope.
 In order to prepare for unpredictability it is important to build a contingency plan in addition to
communication, smart planning, and strong disease management skills.
 Educate
 Understand and accept the unpredictable nature of lupus.
 Explain lupus to your support system of family, friends, and co-workers so they are aware how
this can translate into changes in plans and daily activities.
 Provide your support system with educational materials and trustworthy websites on lupus; these
efforts will allow them to understand the disease and how they can help.
 Communicate
 Get to know the point of contact for each physician who treats your loved one for lupus and any
related health complications. This will help you keep in regular touch with them and will help in
case of an emergency.

11. As a caregiver, how do I handle
the unpredictability of lupus continued?
 Be sure your support system knows about changes in your loved one’s health status, perhaps through a
website or email thread, so that you can efficiently update everyone.
 Prepare
 Schedule home delivery of groceries to ensure there is food in the house when you cannot make it to the
store.
 Arrange for medications and other supplies to be delivered from the pharmacy so that no prescriptions lapse,
and your loved one always has the necessary supplies without you having to go get them.
 Have a babysitter or house-sitter on call to look after children and household responsibilities in case of an
emergency.
 Establish a carpool group to make sure younger family members can continue to participate in their regular
activities.
 Educate yourself about the disease to better understand what situations or triggers have led to a flare in the
past.
 If you are employed at an office job, try to bring home important documents you are working on, and if
possible, arrange for remote access to your work computer system. This will allow you to stay connected in
case your loved one with lupus needs you to stay home with them or needs to be taken to an unexpected
appointment.
 Help your loved one to keep a list of current medications, laboratory test results, physician contacts, and
emergency numbers. See next slide for Emergency Preparedness for specific tips and suggestions.
 Encourage your loved one, based on their age and health status, to engage in proper self-care and disease
management skills. This can mean better awareness of their lupus and a more effective tracking of symptoms
in times of flare

12. Preparation List for Emergency
 How can a caregiver be prepared for an emergency?
 Lupus can be unpredictable, and you may need to take immediate action if a flare
or other critical health complication endangers the health of your loved one.
 A binder divided into monthly tabs can keep you organized and ready in case of an
emergency. Items to include are:
 Personal identification, including name and birth date
 Emergency contacts
 Names, address, and contacts of regular doctors and specialists
 Health insurance information (such as member and group plan numbers)
 Living will and advance directives
 Organ donor authorization
 List of any surgeries and dates they were performed
 Current medications and any vitamin or herbal supplements taken on a regular basis,
and the dosages
 Immunizations and the dates received
 Any allergies

13. Preparation List for Emergency
continued
 Family health history (parents, aunts/uncles, and siblings)
 Important test results such as blood work
 Vision and dental records
 Records and notes from the most recent physical examination and notes on symptoms or flares
 Any other information about health, including diet and exercise regimens
 Keep a “to go bag” next to your binder stocked with the following:
 Toiletries
 Change of clothes
 Phone chargers
 Books
 Anything else you may need for a possible extended hospital stay
 If your loved one with lupus needs to go to the doctor you will most likely be the one to
advocate and accompany them. It will help if you make a habit of writing down symptoms,
flares, and side effects that your loved one experiences. By tracking the date and time of the
event, level of pain, fatigue, stressors, and medications, you and your loved one’s doctors can
be better prepared to handle an emergency.
 If your loved one does need to be admitted to the hospital, enlist the support of friends and
family to help with your other responsibilities, so that you can give your attention to being the
on-site advocate for your loved one. By having a social network in place, and keeping a
detailed binder, your helpers will be able to lend a hand as needed. This will greatly relieve the
stress of the emergency, for both you and your loved one.

14. The Lupus Foundation’s Research Promise
We Lead Scientific Initiatives to Address Barriers in Lupus Drug Development
As part of our three-pronged research strategy, the Lupus Foundation of America leads scientific initiatives to address gaps in areas of lupus research
that have not received adequate attention or funding. We take on the most perplexing issues, including scientific challenges others thought too complex to
overcome. These challenges don’t daunt us. In fact, we welcome them as part of our national leadership role to solve the cruel mystery of lupus and
end its devastating impact on millions of lives worldwide.
Our Medical-Scientific Advisory Council, composed of lupus experts from many specialties, continually assesses the state of lupus research to identify
the most urgent issues facing the field. We convene scientific community leaders to identify solutions and marshal resources to implement projects that
have the potential to overcome barriers, accelerate clinical research, and encourage pharmaceutical and biotechnology companies to develop new therapies
for lupus. Our initiatives have led to the following landmark accomplishments—all of which will accelerate the pace of lupus research and greatly advance
the science and medicine of the disease.
•Development and validation of new biomarkers for lupus, providing better ways to measure disease progression.
•Updating the classification criteria for lupus, improving the early diagnosis and treatment of the disease.
•Research related to the epidemiology of lupus, to better understand the true incidence and prevalence of lupus and the burden of disease.
The prognosis for lupus is better than ever before.
Roadmap to Removing Barriers to Drug Development
In 2009, the Foundation commissioned a nine-month study by the nationally recognized health policy research organization, The Lewin Group, to examine barriers to
lupus drug development. The report, "Overcoming Barriers to Drug Development in Lupus," is the first to detail obstacles and provide recommendations on how to
overcome them. Since the report was issued, the Foundation has been working to bring key stakeholders together to address each barrier. These efforts have resulted
in a collection of far-reaching initiatives which are linked below.
LFA-REAL System to Improve Health and Quality of Life
LFA-REAL™ (Rapid Evaluation of Activity in Lupus) is a new, first-of-its-kind tool to monitor lupus disease activity, addressing both the needs and concerns of
providers and people with lupus. See next slide for more information
LFA Collective Data Analysis Initiative (CDAI)
The initiative provides insight to improve clinical trial design so we can have the arsenal of treatments needed for people living with lupus.
LFA Flare Definition
The first global definition of a lupus flare is a valuable tool for clinicians and investigators in evaluating the effectiveness of a new treatment.

15. LFA-REAL System to
Improve Health and Quality of Life
Currently, there are no adequate measures or tools designed to quickly and easily
help a doctor and patient work together to evaluate lupus disease activity and
make informed treatment decisions. This has serious implications for the care of
people with lupus; moreover, the changing face of healthcare delivery makes the
situation even more complex. The LFA-REAL™ (Rapid Evaluation of Activity in
Lupus) system is being developed as a first-of-its-kind set of tools to monitor
lupus disease activity, addressing both the needs and concerns of clinicians and
people with lupus.

16. What is LFA-REAL?
LFA-REAL is a two part system, based on a series of simple questions and
observations, to determine a treatment’s impact on the patient’s health and
daily life. One set of questions and observations is designed for clinicians and the
other set of questions is designed for patients. Once approved for clinical use,
the LFA-REAL system will enable healthcare providers to make evidence based
and targeted treatment decisions, allowing for overall as well as organ specific
disease assessment. It will be designed so that it’s easy to access, using web and
mobile applications. Measurement systems like LFA-REAL are commonly used for
other diseases, but do not exist for lupus. The system is currently in the research
and design phase of development, and is projected to be finalized by 2017.

17. Potential Benefits of the LFA-REAL System
The Lupus Foundation of America is developing LFA-REAL in collaboration with a
multi-stakeholder group including top lupus experts, doctors, researchers, drug
development companies, agencies of the federal government, people with lupus
and health insurers. The system will be designed to:
 Provide cost-effective and efficient clinical methods to evaluate disease
activity in patients with lupus so clinicians can use the most targeted
treatments.
 Show treatment effectiveness and measure improvement in clinical studies,
speeding development, evaluation and approval of new and better
treatments.
 Reduce unnecessary treatments and administrative costs.
 Provide critical information that supports insurance coverage of new
treatments.

18. Help and Resources
 Through programs of research, education and support services, the Lupus
Foundation of America provides help and hope to people with lupus and their
families.
For Patients, Families and Caregivers
 Those living with lupus, family members and caregivers can find a wide
variety of information in the resource section on the Lupus Foundations Web
site www.lupus.org, including work related issues, insurance, financial
assistance and locating and working with your doctor.

19. Help and Resources continued
 Employment, Disability and Legal Issues
 Because lupus can range in severity, individuals with lupus may be fully able or unable to
work. Fortunately, there are programs and organizations that protect the rights of individuals
within and outside the workplace. Whether the individual is seeking federal disability
benefits or employment opportunities, the following resources offer services to those with
lupus.
 Social Security Disability
 Social Security Disability is the federal program, supported by payroll taxes, that pays
benefits to people who cannot work due to a medical condition. Learn more.
 Work Related Issues
 Through the Americans with Disabilities Act, the Patient Advocate Foundation, and Hire
Disability Solutions, individuals with disabilities are guaranteed equal employment
opportunity. In addition, the Job Accommodation Network (JAN) and DisabilityInfo.gov offer
services and advice to enhance the employment of people with disabilities.


20. Lupus is not a new disease
Lupus has been around for a long time yet it is still as mysterious as it was years ago.
The advances in Lupus have been slow. If you live with someone or are someone with
Lupus do not lose hope! Do not give up. The Lupus Foundation is doing some
wonderful things to bring together all of the research done around the world in hopes
of putting all of the greatest medical minds together to beat this terrible disease. On
November 18, 2014 they celebrated one year of the first open access online research
journal called “Lupus Science& Medicine”
Since the launch, they have received an impressive number of submissions from
researchers from all over the world, from basic science, to clinical and translational
science. They have published articles on important topics such as cardiovascular risks
in children and teens with lupus; the value of repeat biopsy in guiding treatment in
lupus nephritis flares; and pregnancy outcomes among African–American patients with
systemic lupus erythematosus.
These are exciting times of discovery in lupus research. Lupus Science & Medicine
will continue to update you on important scientific results in lupus, as well as new
insights, commentaries, and discussions that are relevant to the treatment and care
for all people affected by lupus.

22. The Lupus Foundation Needs Our Help
There are many ways to take action and help bring an end to this devastating
disease - from donating online, to participating in one of our walk events, to
getting involved in efforts to secure new treatments for lupus. With your help,
the Lupus Foundation of America can get one step closer to solving the cruel
mystery.

24. Take Action
Donate
Thanks to people like you who bring new money to the fight, the Lupus Foundation of
America rallies experts and deploys resources so that society can make progress toward
solving the cruel mystery of lupus and ending its devastating impact. Your donation
supports our mission to improve the quality of life for all people affected by lupus through
programs of research, education, and advocacy. For more information, we invite you to
read our latest annual report.
Make a donation
•The Lupus Foundation of America is a tax-exempt, charitable organization and is eligible to receive tax deductible contributions under the IRS
Code 501(c)(3). Our Federal ID # is 43-1131436. Your gift may be 100% deductible from your taxable income if you itemize your deductions.
•One-time or
monthly donation
•Donate offline
•Memorial donation •Create a memorial or tribute
page
•Honorary donation •Host a fundraising event
•Planned Giving •Donate to your local chapter

25. Other Ways to Give
 There are many other ways to support the Foundation's mission to improve the quality of life for all
people affected by lupus. Other ways to donate include:
 Planned Giving
 Making a planned gift to the Lupus Foundation of America is a special way to support our mission. A
planned gift allows you to donate assets, yet defer the time we actually receive them.
 Workplace Giving
 Find out how to donate to support our programs of research, education, and advocacy through your
workplace.
 Vehicle Donations
 The Lupus Foundation of America vehicle donation program is fast, easy and free. Learn more about
it.
 Lupus America℠ Household Goods Donation Program
 Another way to help find a cure for people living with lupus is to donate household goods to the
Lupus Foundation of America. Your donated items will be sold to for-profit wholesale buyers and the
proceeds used to support research, education, and support services across America.

26. This presentation was put together by a care giver of a daughter who has been
fighting lupus since she was 13 years old and she is now 35. She had a kidney
biopsy back in 1992 when the criteria you had to meet to be diagnosed with lupus
was 10 out of 15 on a list. The rheumatologists taking care of her used to tell me
to take her to a psychiatrist. The nephrologist that did the biopsy at a very
advanced local children’s hospital said it was lupus but the pathologist called it
chronic immune glomerulonephritis, which if you really define all of the words is
another way to say lupus. She now meets most of the criteria on the list. I
watched her blow up from the prednisone and get the moon face at a very
difficult age and now she is so thin she could use some of that extra weight she
didn’t need back then. I watched her lay in the bed for a better part of an entire
year. This disease has taking its toll on her and her children as well as the rest of
our family. The possibility of new medicine, research and diagnosis is exciting
and a long time coming. This disease has destroyed enough lives it is about time
we can start taking some of them back from it. My hope is that there is
something in this presentation that will be of help to someone that needs it at
this time. If it only helps one person it was worth my time and research to put it
together. May God bless you and your family and friends as you fight this disease
together.

27. References
http://www.lupus.org/
http://b.3cdn.net/lupus/89d786c5849a8bc048_e1m6idpop.pdf
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