Important Items to Remember When Suffering from a Chronic Illness:
1. Support (groups, friends, family, spouses, etc.)
2. Your mental and physical health (Therapy, Appointments, etc.)
3. Medications (What works, What doesn’t, researching it before taking it, speaking up and advocating for yourself, refilling, calling
in, picking up, taking on time, etc.)
4. Acceptance (you have this disease, please do not believe that “Ignorance is Bliss”, please do not believe that if you do not
acknowledge it than it is not there, please do not believe that if you do not say it aloud or think about it that it will not continue to cause
internal/external damage to the only body and the only life that you have)
5. Knowledge (Education is priceless, educating other is invaluable, knowledge is power, be aware of your disease and its signs,
symptoms, requirements beyond the simplicity of a“Diagnosis”)
Lupus Facts
Lupus is a prevalent and lifelong auto-immune disease that, for reasons currently unknown, causes the immune system to attack the body's own tissues and organs, including, but not limited to, the joints, kidneys, heart, lungs, brain, blood, and skin. Lupus is one of America’s least acknowledged severe illnesses. While Lupus is pervasive and extensive, awareness and accurate education and knowledge about seems to fall far behind many other more common and“well-known” illnesses such as Breast Cancer and AIDS. Living a fulfilling, satisfying, happy and somewhat healthy lifestyle with lupus is still very much a possibility, but doing so depends greatly on receiving an early and correct diagnosis and maintaining consistent and accurate treatment. There are many treatment options for lupus patients and symptoms, but there is no cure at this time.
Lupus Myth: Lupus can be cured.
Lupus Reality: While lupus symptoms may come and go, there is no cure for systemic lupus erythematosus (SLE).
Lupus Myth: Only women get lupus.
Lupus Reality: 10% of people with lupus are men.
Lupus Myth: Lupus is easy to diagnose.
Lupus Reality: Because symptoms come and go and vary from person to person, people can wait years from the first symptoms of lupus until they receive the correct diagnosis.
Lupus Myth: There is a “lupus test.”
Lupus Reality: There is no single test that can identify lupus. Doctors diagnose lupus through a combination of factors, including symptom assessment, medical history, and various lab tests.
Lupus Myth: The symptoms of lupus are distinctive and happen only if you have the disease.
Lupus Reality: The symptoms of lupus are often the same as the symptoms of other diseases. As a result, lupus can be mistaken for other autoimmune diseases.
Lupus Myth: I can get lupus from coming into contact with someone who has it.
Lupus Reality: Lupus is not contagious; you won't "catch it" from another person. Lupus is an immune function disorder that leads to inflammation. It is caused by both genetic and environmental factors.
Lupus Myth: Lupus can be cured.
Lupus Reality: While lupus symptoms may come and go, there is no cure for systemic lupus erythematosus (SLE).
Lupus Myth: Only women get lupus.
Lupus Reality: 10% of people with lupus are men.
Lupus Myth: Lupus is easy to diagnose.
Lupus Reality: Because symptoms come and go and vary from person to person, people can wait years from the first symptoms of lupus until they receive the correct diagnosis.
Lupus Myth: There is a “lupus test.”
Lupus Reality: There is no single test that can identify lupus. Doctors diagnose lupus through a combination of factors, including symptom assessment, medical history, and various lab tests.
Lupus Myth: The symptoms of lupus are distinctive and happen only if you have the disease.
Lupus Reality: The symptoms of lupus are often the same as the symptoms of other diseases. As a result, lupus can be mistaken for other autoimmune diseases.
Lupus Myth: I can get lupus from coming into contact with someone who has it.
Lupus Reality: Lupus is not contagious; you won't "catch it" from another person. Lupus is an immune function disorder that leads to inflammation. It is caused by both genetic and environmental factors.
Helping Others Understand Lupus
It is important to have a support network when you are living with lupus. By learning to talk with your family, friends, and co-workers about lupus and the effect it has on you, you're building that support network.
Talking with your family and friends
Lupus can feel overwhelming to your family and friends. They may have trouble understanding and adjusting to your diagnosis, and may feel confused, out of control, and fearful. They may need to take on added responsibilities. It is important that you have an open and honest conversation. It may also help the people in your support system to learn about lupus so they can better understand how you're feeling.
Explaining what others can't see
Some people have difficulty understanding how you feel when you have lupus. Try taking them through a day in your life, using real-life examples to help them understand what it's like to be in your shoes. Describing the specifics may help paint a clearer picture of what it's like to live with lupus.
Bring them along
If you feel comfortable, consider bringing someone with you to your next doctor's appointment. This can give them a chance to ask questions they may have. It may also help them to better understand what you are going through.
Talking with your family and friends
Lupus can feel overwhelming to your family and friends. They may have trouble understanding and adjusting to your diagnosis, and may feel confused, out of control, and fearful. They may need to take on added responsibilities. It is important that you have an open and honest conversation. It may also help the people in your support system to learn about lupus so they can better understand how you're feeling.
Explaining what others can't see
Some people have difficulty understanding how you feel when you have lupus. Try taking them through a day in your life, using real-life examples to help them understand what it's like to be in your shoes. Describing the specifics may help paint a clearer picture of what it's like to live with lupus.
Bring them along
If you feel comfortable, consider bringing someone with you to your next doctor's appointment. This can give them a chance to ask questions they may have. It may also help them to better understand what you are going through.
Prevalence, Symptoms, Treatments, Prognosis, Reasearch and Economical Impact
The Ad Council’s survey found that only 18 percent of women are personally concerned about lupus. The majority of respondents expressed concern about other health-related conditions, including cancer (67%), depression (61%), high blood pressure (58%), diabetes (57%) and arthritis (52%). Furthermore, approximately 29% could not correctly define lupus as an autoimmune disease, and 31% were not aware that women of childbearing age are most at risk.
50% of Lupus patients see at least 3 doctors, over at least 4 years before being diagnosed.
In a nationwide poll of 1,000 adults conducted for the LFA, 61% said they knew little to nothing about Lupus.
Prevalence
1.5 million Americans suffer from Lupus that is 1 out of every 200 Americans. 5 million worldwide are said to be affected with some form of Lupus.
Estimates say 16,000 Americans develop Lupus each year.
90% of those with lupus are women.
Lupus affects African Americans three times more commonly than Caucasians. Asians, Hispanics, and Native Americans are also more commonly affected.
80% of those with Lupus develop it between the ages of 15-45.
Discoid Lupus accounts for about 10% of Lupus cases.
About 5% of the children born to individuals with Lupus will develop the illness.
20% of people with Lupus will have a close relative (parent or sibling) who already has Lupus or may develop Lupus.
Symptoms
Symptoms include fever, fatigue, loss of appetite, rashes, hair loss, swollen glands, sensitivity to light, chest, muscle and joint pain, ulcers
in the mouth or nose, among many other difficulties physically and mentally.
About 10% of Lupus patients also have symptoms of some other connective tissue disorder.
40-60% of SLE patients have photosensitivity.
50% of SLE patients will have a neuro-psychiatric disorder such as seizures, headache, memory loss or depression.
65% of SLE patients will have skin involvement including malar rashes and discoid lesions.
Achy or swollen joints are found in 95% of patients.
Unexplained fevers are found in 90% of patients.
50% of SLE patients have kidney involvement.
27% have hair loss.
Mouth or nose ulcers have been found in 12% of SLE patients.
71% are anemic.
81% of SLE patients have prolonged and/or extreme fatigue.
Brain and Nervous System:
Lupus can contribute to stroke, seizures, vasculitis, cognitive dysfunction (memory loss or confusion, AKA "lupus fog"), persistent and unusual
headaches. Lupus may cause some hair loss, as do some lupus medications.
Eyes:
Lupus can damage nerves and blood vessels in the eye, leading to dry or puffy eyes, and increasing sensitivity to light.
Mouth:
Sores inside the mouth are a common symptom of lupus.
Skin:
Lupus may cause skin rashes, and is known for its distinctive "butterfly" rash on the face. You may also experience hives or sores.
Heart:
People with lupus are at greater risk for heart disease and heart attack than people with lupus. Lupus can inflame the lining and tissue of the
heart causing myocarditis or endocarditis.
Lungs:
Lupus can damage the lungs through pleurisy and pneumonitis (inflammation), or pulmonary emboli, resulting in shortness of breath and pain in the chest from deep breathing.
Stomach & Digestion:
Lupus can cause or exacerbate ulcerative colitis, pancreatitis, and liver conditions, resulting in nausea, vomiting, recurring and persistent
abdominal pain, bladder infections, and blood in urine. Certain medications may also cause similar symptoms.
Kidneys:
Lupus often attacks the kidneys, which can lead to lupus nephritis and eventually organ failure and a need for dialysis or transplant.
Legs, Joints, and Feet:
Persistent joint pain and swelling is a common lupus symptom. Legs and feet may also swell, especially if the kidneys are affected.
Typical treatments include:
Nonsteroidal anti-inflammatory drugs
Antimalarial drugs
Corticosteroids
Immunosuppressant’s
Opiates for pain
If left untreated, lupus is potentially fatal. Lupus can lead to organ damage and failure- serious conditions that arise include kidney disease,
pancreatitis, pleurisy, vasculitis, pericarditis, and cancer.
Prognosis
Thousands of Americans die of Lupus each year.
Only 50% of lupus patients lived 4 years after diagnosis in the 1950s. Currently 80-90% of Lupus patients survive 10 years or more after diagnosis.
About 15% of arthritis deaths are from SLE.
Almost 37% of SLE deaths are among people between 15 and 44.
Lupus deaths are five times higher for women than men.
Lupus deaths are three times higher for blacks than whites.
Research
The newest, and only treatment that has been approved by the FDA for Lupus in over 50 years is Benylsta and it is also still in its trial stages
and extremely new to the medical community.
We still do not know what causes Lupus.
Economic Impact
Two of three Lupus patients reported a complete or partial loss of their income because they no longer are able to work fulltime due to complications of lupus.
One in three patients has been temporarily disabled by the disease, and one in four currently receive disability payments.
According to a Lupus Foundation of America membership survey, one in four patients receives their health care through a government-sponsored
program, such as Medicare or Medicaid.
Lupus costs the nation over $100 billion a year in direct and indirect medical costs
Lupus patients spend an average of $13,735 - $27,531 on medical care compared to $7,794 - $9,788 spent by those without Lupus. The cost rose to
$29,034 - $62,651 if the Lupus patient has nephritis.
50% of Lupus patients see at least 3 doctors, over at least 4 years before being diagnosed.
In a nationwide poll of 1,000 adults conducted for the LFA, 61% said they knew little to nothing about Lupus.
Prevalence
1.5 million Americans suffer from Lupus that is 1 out of every 200 Americans. 5 million worldwide are said to be affected with some form of Lupus.
Estimates say 16,000 Americans develop Lupus each year.
90% of those with lupus are women.
Lupus affects African Americans three times more commonly than Caucasians. Asians, Hispanics, and Native Americans are also more commonly affected.
80% of those with Lupus develop it between the ages of 15-45.
Discoid Lupus accounts for about 10% of Lupus cases.
About 5% of the children born to individuals with Lupus will develop the illness.
20% of people with Lupus will have a close relative (parent or sibling) who already has Lupus or may develop Lupus.
Symptoms
Symptoms include fever, fatigue, loss of appetite, rashes, hair loss, swollen glands, sensitivity to light, chest, muscle and joint pain, ulcers
in the mouth or nose, among many other difficulties physically and mentally.
About 10% of Lupus patients also have symptoms of some other connective tissue disorder.
40-60% of SLE patients have photosensitivity.
50% of SLE patients will have a neuro-psychiatric disorder such as seizures, headache, memory loss or depression.
65% of SLE patients will have skin involvement including malar rashes and discoid lesions.
Achy or swollen joints are found in 95% of patients.
Unexplained fevers are found in 90% of patients.
50% of SLE patients have kidney involvement.
27% have hair loss.
Mouth or nose ulcers have been found in 12% of SLE patients.
71% are anemic.
81% of SLE patients have prolonged and/or extreme fatigue.
Brain and Nervous System:
Lupus can contribute to stroke, seizures, vasculitis, cognitive dysfunction (memory loss or confusion, AKA "lupus fog"), persistent and unusual
headaches. Lupus may cause some hair loss, as do some lupus medications.
Eyes:
Lupus can damage nerves and blood vessels in the eye, leading to dry or puffy eyes, and increasing sensitivity to light.
Mouth:
Sores inside the mouth are a common symptom of lupus.
Skin:
Lupus may cause skin rashes, and is known for its distinctive "butterfly" rash on the face. You may also experience hives or sores.
Heart:
People with lupus are at greater risk for heart disease and heart attack than people with lupus. Lupus can inflame the lining and tissue of the
heart causing myocarditis or endocarditis.
Lungs:
Lupus can damage the lungs through pleurisy and pneumonitis (inflammation), or pulmonary emboli, resulting in shortness of breath and pain in the chest from deep breathing.
Stomach & Digestion:
Lupus can cause or exacerbate ulcerative colitis, pancreatitis, and liver conditions, resulting in nausea, vomiting, recurring and persistent
abdominal pain, bladder infections, and blood in urine. Certain medications may also cause similar symptoms.
Kidneys:
Lupus often attacks the kidneys, which can lead to lupus nephritis and eventually organ failure and a need for dialysis or transplant.
Legs, Joints, and Feet:
Persistent joint pain and swelling is a common lupus symptom. Legs and feet may also swell, especially if the kidneys are affected.
Typical treatments include:
Nonsteroidal anti-inflammatory drugs
Antimalarial drugs
Corticosteroids
Immunosuppressant’s
Opiates for pain
If left untreated, lupus is potentially fatal. Lupus can lead to organ damage and failure- serious conditions that arise include kidney disease,
pancreatitis, pleurisy, vasculitis, pericarditis, and cancer.
Prognosis
Thousands of Americans die of Lupus each year.
Only 50% of lupus patients lived 4 years after diagnosis in the 1950s. Currently 80-90% of Lupus patients survive 10 years or more after diagnosis.
About 15% of arthritis deaths are from SLE.
Almost 37% of SLE deaths are among people between 15 and 44.
Lupus deaths are five times higher for women than men.
Lupus deaths are three times higher for blacks than whites.
Research
The newest, and only treatment that has been approved by the FDA for Lupus in over 50 years is Benylsta and it is also still in its trial stages
and extremely new to the medical community.
We still do not know what causes Lupus.
Economic Impact
Two of three Lupus patients reported a complete or partial loss of their income because they no longer are able to work fulltime due to complications of lupus.
One in three patients has been temporarily disabled by the disease, and one in four currently receive disability payments.
According to a Lupus Foundation of America membership survey, one in four patients receives their health care through a government-sponsored
program, such as Medicare or Medicaid.
Lupus costs the nation over $100 billion a year in direct and indirect medical costs
Lupus patients spend an average of $13,735 - $27,531 on medical care compared to $7,794 - $9,788 spent by those without Lupus. The cost rose to
$29,034 - $62,651 if the Lupus patient has nephritis.
The Importance of Keeping Open Communication With Your Doctor(s)
Make sure your doctors are in touch with each other
Many people living with lupus see a rheumatologist in addition to several other doctors. Give your doctors each other's names and contact information to ensure that everyone is on the same page regarding your treatment.
Keep a running list of questions and don't be afraid to ask them
When it comes to your health, there are no "stupid questions." When you have questions, write them down and bring them to your next doctor's appointment.
Track your symptoms
Lupus symptoms come and go, and new ones can appear over time. Keep track of the symptoms you experience and share them with your doctors. Consider getting a notebook and keeping a symptom diary to record what your symptoms are, how long they last, and what could possibly have triggered them (such as stress, sun exposure, physical activity, etc.), as well as what medications you're taking and when you take them. Bring your notebook with you every time you visit your doctor.
Four ears are better than two
Bring a friend, family member, or someone you trust to your appointment. Doing so can be invaluable in helping you remember more and get the most out of your visit.
*Suggestions from Benlysta.com
Many people living with lupus see a rheumatologist in addition to several other doctors. Give your doctors each other's names and contact information to ensure that everyone is on the same page regarding your treatment.
Keep a running list of questions and don't be afraid to ask them
When it comes to your health, there are no "stupid questions." When you have questions, write them down and bring them to your next doctor's appointment.
Track your symptoms
Lupus symptoms come and go, and new ones can appear over time. Keep track of the symptoms you experience and share them with your doctors. Consider getting a notebook and keeping a symptom diary to record what your symptoms are, how long they last, and what could possibly have triggered them (such as stress, sun exposure, physical activity, etc.), as well as what medications you're taking and when you take them. Bring your notebook with you every time you visit your doctor.
Four ears are better than two
Bring a friend, family member, or someone you trust to your appointment. Doing so can be invaluable in helping you remember more and get the most out of your visit.
*Suggestions from Benlysta.com