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• The American Autoimmune Related Diseases Association (AARDA) is dedicated to the eradication of autoimmune diseases and the alleviation of the suffering and socioeconomic impact of autoimmune diseases through education, public awareness, research, and patient services.

• AARDA is a national voluntary health organization.

• AARDA is an authoritative source of information on autoimmunity.

• AARDA is the only comprehensive national agency representing the disease category of autoimmune disease.

• AARDA conducts national awareness campaigns,

• supports autoimmune research,

• provides patient educational programs and materials,

• organizes scientific meetings, and

• advocates on behalf of autoimmune patients and their families.

The National Institutes of Health (NIH) estimates that up to 23.5 million Americans are affected by autoimmune diseases. However, this number includes only those 24 diseases for which there are epidemiological studies. There are more than 100 autoimmune diseases.

Autoimmunity at a Glance

Women75%

Men25%

Autoimmune Disease by Gender

• Approximately 100 diseases

• Affects 50 million Americans

• Costs over $120 billion annually

• 250,000 new diagnoses each year

• Major cause of death in women

Autoimmune Disease...

History of Autoimmune Diseases

• Many different disciplines involved

• Lack of focus on underlying etiology

• Most research is disease-specific

• Very poor cross talk among different medical disciplines

24 of the Most Common Autoimmune Diseases

• Graves’ disease• Rheumatoid arthritis• Thyroiditis/hypothyroidism• Vitiligo• Type 1 diabetes• Pernicious anemia• Multiple sclerosis• Glomerulonephritis• Systemic lupus erythematosus• Sjögren’s syndrome• Uveitis• Scleroderma

• Addison’s disease• Autoimmune hemolytic anemia• Autoimmune hepatitis • Goodpasture’s syndrome• Autoimmune thrombocytopenic purpura• Myasthenia gravis• Myocarditis• Pemphigus• Polymyositis/dermatomyositis• Primary biliary cirrhosis• Rheumatic heart disease• Relapsing polychondritis

Although, autoimmune diseases are very diverse anatomically and can affect almost every organ or system in the body from the eyes and ears to the heart, liver, and skin, they are all caused by an autoimmune response to one’s own tissue, cells and organs.

Autoimmune diseases need to be recognized as a category, similar to cancer, rather than being listed under the organ or system of the body affected by the disease.

The Impact of Autoimmune Diseases

KidneysLupus

Juvenile Diabetes

Glomerulonephritis

BloodHemolytic Anemia

Neutropenia

Autoimmune Thrombocytopenic Purpura

Pernicious anemia

HeartCardiomyopathy

Autoimmune Myocarditis

LungsAutoimmune Pulmonary Fibrosis

Brain &

Nervous SystemMultiple Sclerosis

GastrointestinalCrohn’s Disease

Celiac Sprue

SkinPemphigus

Scleroderma

JointsRheumatoid Arthritis

Eye and MouthSjogren’s Syndrome

Uveitis (eye)

ThyroidGrave’s Disease/Hashimoto’s Thyroiditis

• Biomarkers for earlier diagnosis and individualized treatment

• Increased basic autoimmune research into the mechanisms involved in the autoimmune response.

• Increased research into environmental triggers for autoimmune diseases

AARDA identifies areas of research that need to be expanded include:

Disability Evaluation Under Social SecurityImmune System:

Autoimmune disorders (14.00D).Autoimmune disorders are caused by dysfunctional immune responses directed against the body’s own tissues, resulting in chronic, multisystem impairments that differ in clinical manifestations, course, and outcome. They are sometimes referred to as rheumatic diseases, connective tissue disorders, or collagen vascular disorders. Some of the features of autoimmune disorders in adults differ from the features of the same disorders in children.

Many patients may have more than one autoimmune disease, even as many as four or five autoimmune

diseases. In some cases, taken together, having more than one autoimmune disease increases the severity of the patient’s condition and could qualify a patient for

compassionate allowance.

Unfortunately not all of the autoimmune diseases that cause severe disability are listed under immune conditions. As a result, some serious and disabling autoimmune diseases are not listed under any system or disease category.

• Behçet's disease (central nervous system)• Chronic inflammatory demylineating polyneuropathy (CIDP)• Antiphospholipid syndrome involving stroke and pulmonary thrombosis • Systemic scleroderma with pulmonary involvement• Acute disseminated encephalomyelitis• Acute necrotizing hemorrhagic leukoencephalitis• Autoimmune aplastic anemia• Paraneoplastic cerebellar degeneration• Wegners ganulomatosis

Serious and disabling autoimmune diseases that are not listed under immune conditions but are clearly autoimmune and would qualify for

compassionate allowance

• Autoimmune disease can be mild in one patient and severe in another

patient with the same disease, depending on disease involvement and how the response of the patient to therapies.• In some patients their disease is progressive while other patients with the same disease will have intermittent periods of disease activity and remissions. • In some patients, the disease is fulminating and life threatening from onset or from significant sudden change in disease course.

Autoimmune diseases known to vary significantly in ways they present in individuals

• Extreme fatigue• Pain• Crippling• Neurological manifestations• Impaired overall functioning• Muscular weakness/atrophy• Impaired ambulatory ability• Loss of sight• Stroke• Severe kidney damage• Severe skin involvement• Pulmonary insufficiency • Severe liver or bile duct damage

Disabling Manifestations of Autoimmune Disease

Conditions that usually would qualify for compassionate allowance in which it would be the exception to see improvement because of damage to vital organs• Central nervous system lupus• Severe lupus nephritis• Progressive multiple sclerosis • Catastrophic antiphospholipid syndrome• Advanced autoimmune liver disease• Systemic scleroderma• Severe rheumatoid arthritis  • Chronic autoimmune eye disease with significant loss of vision

• Devic disease• Severe, non-responsive Crohn’s disease• Paraneoplastic cerebellar degeneration• Primary bilary cirrhosis• Wegne’s granulomatosis • Pemphigus• Acute disseminated encephalomyelitis• Autoimmune aplastic anemia• Non-responsive polymyositis• Central nervous system Behcet’s disease• Pulmonary fibrosis

Thank you