The Lupus Book (4th Edition) by Daniel Wallace - Find it on Amazon
This book is very informative and helpful. I like that you can get into the technical side as much as you want with the wonderful information provided, or you can use this as a handy reference tool and a well put together overview of lupus. For the past two and a half years I have been going through some of the signs and symptoms of lupus and am currently in "medical limbo" until I can get a specific diagnosis. (My rheumatologist currently is considering Lupus or Behçet's Disease as the source of my troubles). Since lupus is one of the diseases my symptoms and blood work are pointing toward, I asked my library to purchase this book and borrowed it from there. If I do get diagnosed with lupus, I plan to buy this book as it is very informative and definitely worth owning.
I like that this book is written by a doctor who cares for lupus patients and not only used medical research but his own knowledge from his personal practice experience. It can get very technical...but you can also easily skim those technical sections. The writer not only discusses things that are common in lupus, but also specific problems that may arise down the road, and I think this is a great reference point for anyone with lupus who may find their disease progressing in one of those directions.
This is a very well done and up to date book. Excellent reference.
(Book review from the Apple A Day blog.)
Wednesday, May 5, 2010
Tuesday, May 4, 2010
What is an autoimmune disorder?
Autoimmune disorders or diseases are very widespread - there are more than 80 serious, chronic illnesses and they all have an effect on one or more of the human organ systems or tissue types. In these illnesses, the body that was designed to protect instead reacts by attacking the body.
Commonly, the organs and tissues effected are:
Red blood cells
Blood vessels
Connective tissues
Endocrine glands such as the thyroid or pancreas
Muscles
Joints
Skin
A list of some of the many autoimmune disorders are listed here for your reference:
Thyroiditis
Lupus (SLE)
Diabetes (Type 1)
Rheumatoid Arthritis (RA)
Sjogren Syndrome
Multiple Sclerosis (MS)
Celiac Disease
Vasculitis
There is currently no cure for autoimmune disorders, although in rare cases they may disappear on their own. Many people may experience flare-ups and temporary remissions in symptoms, others chronic symptoms or a progressive worsening. Treatment of autoimmune disorders is tailored to the individual and may change over time. The goal is to relieve symptoms, minimize organ and tissue damage, and preserve organ function. (From labtestsonline.org)
Symptoms can vary depending on the person involved and the disease.
Some very nonspecific symptoms will often accompany autoimmune diseases, and may include:
Dizziness
Fatigue
General ill-feeling
Low-grade fever
(Information in this post was taken from Medline Plus and other websites. This and more information can also be seen on the Apple A Day blog.)
Commonly, the organs and tissues effected are:
Red blood cells
Blood vessels
Connective tissues
Endocrine glands such as the thyroid or pancreas
Muscles
Joints
Skin
A list of some of the many autoimmune disorders are listed here for your reference:
Thyroiditis
Lupus (SLE)
Diabetes (Type 1)
Rheumatoid Arthritis (RA)
Sjogren Syndrome
Multiple Sclerosis (MS)
Celiac Disease
Vasculitis
There is currently no cure for autoimmune disorders, although in rare cases they may disappear on their own. Many people may experience flare-ups and temporary remissions in symptoms, others chronic symptoms or a progressive worsening. Treatment of autoimmune disorders is tailored to the individual and may change over time. The goal is to relieve symptoms, minimize organ and tissue damage, and preserve organ function. (From labtestsonline.org)
Symptoms can vary depending on the person involved and the disease.
Some very nonspecific symptoms will often accompany autoimmune diseases, and may include:
Dizziness
Fatigue
General ill-feeling
Low-grade fever
(Information in this post was taken from Medline Plus and other websites. This and more information can also be seen on the Apple A Day blog.)
Monday, May 3, 2010
Lupus Statistics
From the Lupus Foundation of America at Lupus.org:
Cases of Lupus
The Lupus Foundation of America estimates that 1.5 million Americans, and at least five million people worldwide, have a form of lupus.
Although lupus can strike men and women of all ages, 90 percent of individuals diagnosed with the disease are women. Most people will develop lupus between the ages of 15-44.
Systemic lupus accounts for approximately 70 percent of all cases of lupus. In approximately half of these cases, a major organ, such as the heart, lungs, kidneys or brain, will be affected. Cutaneous lupus (affecting only the skin) accounts for approximately 10 percent of all lupus cases. Drug-induced lupus accounts for about 10 percent of all lupus cases and is caused by high doses of certain medications. The symptoms of drug-induced lupus are similar to systemic lupus; however, symptoms usually subside when the medications are discontinued.
In approximately 10 percent of all cases, individuals will have symptoms and signs of more than one connective tissue disease, including lupus. A physician may use the term "overlap syndrome" or "mixed connective tissue disease" to describe the illness.
20 percent of people with lupus will have a parent or sibling who already has lupus or may develop lupus.
About 5 percent of the children born to individuals with lupus will develop the illness.
Lupus is two to three times more prevalent among women of color -- African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians and other Pacific Islanders -- than among Caucasian women.
It is difficult to determine the annual number of new lupus cases, or the number of individuals who die from health complications of the disease. However, due to improved diagnosis and disease management, most people with the disease will go on to live a normal life span. However, it is believed that between 10-15 percent of people with lupus will die prematurely due to complications of lupus.
The U.S. Centers for Disease Control and Prevention issued a report in May 2002 which indicated that deaths attributed to lupus increased over a 20-year period, particularly among African American women ages 45-64. However, it is not clear if the rise is the result of an actual increase in lupus mortality or better identification and reporting of deaths due to complications of the disease. (Trends in Deaths from SLE -- United States, 1979 - 1998
Economic Impact
A study reported in October 2008 found that the average annual direct health care cost of patients with lupus was $12,643. The study's authors also determined that the mean annual productivity costs (lost hours of productive work) for participants of employment age (between the ages of 18 and 65) was $8,659. Thus, the mean annual total costs (combining direct costs and productivity costs for subjects of employment age) was $20,924.
According to a Lupus Foundation of America membership survey, one in four patients receive their health care through a government-sponsored program, such as Medicare or Medicaid.
Two of three lupus patients reported a complete or partial loss of their income because they no longer are unable to work fulltime due to complications of lupus.
One in three have been temporarily disabled by the disease, and one in four currently receive disability payments.
Awareness
While lupus is a widespread disease, awareness of the disease lags behind many other illnesses.
In a nationwide poll of 1,000 adults conducted for the LFA, 38% said they are somewhat or very familiar with lupus, while 39% have only heard of the name of the disease and 22% have never heard of lupus.
In an another survey, only four of ten young adults ages 18-24 claimed to be aware of lupus, even though the disease often strikes during the childbearing years.
While 65% of respondents to this survey claimed awareness of lupus, only 20% could correctly answer basic questions about the disease.
Diagnosis and Treatment
A LFA survey of its members suggests that more than half of those afflicted with lupus suffered at least four years, and saw three or more doctors before obtaining a correct diagnosis of lupus.
Nearly half of the survey participants (49%) received their diagnosis of lupus after being examined by a rheumatologist, a medical specialist who treats diseases of the connective tissue.
Four of ten lupus patients are treated by three or more doctors, and take six or more medications to treat symptoms of the disease.
Other Autoimmune Diseases
One of three patients responding to the LFA membership survey reported they had another autoimmune disease in addition to lupus, and almost half had a relative with lupus.
Autoimmune diseases like lupus often run in families.
Coping
Most lupus patients reported that they are coping well with lupus (78%), and that other family members are understanding and supportive (72%).
People with lupus named other family members (84%) and friends (72%) as their primary support network.
The survey participants cited pain (65%), lifestyle changes (61%), and emotional problems associated with lupus (50%) as the most difficult factors for coping with lupus.
Cases of Lupus
The Lupus Foundation of America estimates that 1.5 million Americans, and at least five million people worldwide, have a form of lupus.
Although lupus can strike men and women of all ages, 90 percent of individuals diagnosed with the disease are women. Most people will develop lupus between the ages of 15-44.
Systemic lupus accounts for approximately 70 percent of all cases of lupus. In approximately half of these cases, a major organ, such as the heart, lungs, kidneys or brain, will be affected. Cutaneous lupus (affecting only the skin) accounts for approximately 10 percent of all lupus cases. Drug-induced lupus accounts for about 10 percent of all lupus cases and is caused by high doses of certain medications. The symptoms of drug-induced lupus are similar to systemic lupus; however, symptoms usually subside when the medications are discontinued.
In approximately 10 percent of all cases, individuals will have symptoms and signs of more than one connective tissue disease, including lupus. A physician may use the term "overlap syndrome" or "mixed connective tissue disease" to describe the illness.
20 percent of people with lupus will have a parent or sibling who already has lupus or may develop lupus.
About 5 percent of the children born to individuals with lupus will develop the illness.
Lupus is two to three times more prevalent among women of color -- African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians and other Pacific Islanders -- than among Caucasian women.
It is difficult to determine the annual number of new lupus cases, or the number of individuals who die from health complications of the disease. However, due to improved diagnosis and disease management, most people with the disease will go on to live a normal life span. However, it is believed that between 10-15 percent of people with lupus will die prematurely due to complications of lupus.
The U.S. Centers for Disease Control and Prevention issued a report in May 2002 which indicated that deaths attributed to lupus increased over a 20-year period, particularly among African American women ages 45-64. However, it is not clear if the rise is the result of an actual increase in lupus mortality or better identification and reporting of deaths due to complications of the disease. (Trends in Deaths from SLE -- United States, 1979 - 1998
Economic Impact
A study reported in October 2008 found that the average annual direct health care cost of patients with lupus was $12,643. The study's authors also determined that the mean annual productivity costs (lost hours of productive work) for participants of employment age (between the ages of 18 and 65) was $8,659. Thus, the mean annual total costs (combining direct costs and productivity costs for subjects of employment age) was $20,924.
According to a Lupus Foundation of America membership survey, one in four patients receive their health care through a government-sponsored program, such as Medicare or Medicaid.
Two of three lupus patients reported a complete or partial loss of their income because they no longer are unable to work fulltime due to complications of lupus.
One in three have been temporarily disabled by the disease, and one in four currently receive disability payments.
Awareness
While lupus is a widespread disease, awareness of the disease lags behind many other illnesses.
In a nationwide poll of 1,000 adults conducted for the LFA, 38% said they are somewhat or very familiar with lupus, while 39% have only heard of the name of the disease and 22% have never heard of lupus.
In an another survey, only four of ten young adults ages 18-24 claimed to be aware of lupus, even though the disease often strikes during the childbearing years.
While 65% of respondents to this survey claimed awareness of lupus, only 20% could correctly answer basic questions about the disease.
Diagnosis and Treatment
A LFA survey of its members suggests that more than half of those afflicted with lupus suffered at least four years, and saw three or more doctors before obtaining a correct diagnosis of lupus.
Nearly half of the survey participants (49%) received their diagnosis of lupus after being examined by a rheumatologist, a medical specialist who treats diseases of the connective tissue.
Four of ten lupus patients are treated by three or more doctors, and take six or more medications to treat symptoms of the disease.
Other Autoimmune Diseases
One of three patients responding to the LFA membership survey reported they had another autoimmune disease in addition to lupus, and almost half had a relative with lupus.
Autoimmune diseases like lupus often run in families.
Coping
Most lupus patients reported that they are coping well with lupus (78%), and that other family members are understanding and supportive (72%).
People with lupus named other family members (84%) and friends (72%) as their primary support network.
The survey participants cited pain (65%), lifestyle changes (61%), and emotional problems associated with lupus (50%) as the most difficult factors for coping with lupus.
Sunday, May 2, 2010
Common Symptoms of Lupus
According to the Lupus Foundation of America at Lupus.org, here are the common symptoms of Lupus:
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 – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
Abnormal antinuclear antibody (ANA)
People with lupus also may experience symptoms that do not appear among the ACR criteria:
Fever (over 100° F)
Extreme fatigue
Hair loss
Fingers turning white and/or blue when cold (Raynaud’s phenomenon)
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 – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
Abnormal antinuclear antibody (ANA)
People with lupus also may experience symptoms that do not appear among the ACR criteria:
Fever (over 100° F)
Extreme fatigue
Hair loss
Fingers turning white and/or blue when cold (Raynaud’s phenomenon)
Saturday, May 1, 2010
May is Lupus Awareness Month!
A purple awareness ribbon can be worn or displayed for many diseases and causes - Lupus being one of them.
May is Lupus Awareness Month - Go Purple!
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