1. FINAL Autoimmune Disease and Fatigue: Patients Speak Survey Executive Summary - Page 1
Autoimmune Disease
and Fatigue:
Patients Speak
RESEARCH STUDY
EXECUTIVE SUMMARY
March 2015

2. FINAL Autoimmune Disease and Fatigue: Patients Speak Survey Executive Summary - Page 2
Introduction
In late 2014, the American Autoimmune Related Diseases Association (AARDA)
published the following post on its Facebook page encouraging its 65,000+ followers to
respond:
Autoimmune disease and fatigue, let’s discuss. How has fatigue affected your
daily life?
In less than 36 hours, AARDA received an overwhelming response from its followers.
Fully 100 percent of those who responded said fatigue was an issue for them. Based
on a review of the 357 responses received, four major areas of impact on patients
emerged concerning the link between autoimmune disease and fatigue, including:
● Loss of Quality of Life/Sense of Loss of Self
● Lack of Understanding of Fatigue by Doctors, Family and Friends/Co-Workers
● Mental Health Issues
● Financial/Economic Impact on Individuals and their Family
As a result, AARDA decided to conduct this survey of autoimmune disease patients to
more fully explore if and how fatigue affects patients’ lives.
Methodology
AARDA conducted the survey online using Survey Monkey and promoted the link via
AARDA’s Facebook page (73,000+ followers), through the Autoimmune Awareness and
Education Forum Facebook group (7,000+ members) and through email alerts to the
National Coalition of Autoimmune Patient Groups (37 disease specific patient advocacy
organizations).
The survey was in the field for roughly four weeks from Saturday, February 7, 2015 –
Monday, March 2, 2015.
A total of 7,874 responses were received.
In order to ensure that only patients with autoimmune disease were included in this
survey, a question asking respondents if they suffered from one or more autoimmune
diseases was used as a screening question upfront. If patients said “yes,” they were
then asked to indicate how many autoimmune diseases they have and to name them.

3. FINAL Autoimmune Disease and Fatigue: Patients Speak Survey Executive Summary - Page 3
If patients answered “no” to the screening question, they were forwarded to an exit,
“thank you” screen.
The few (less than .5 percent) who report having only Chronic Fatigue Syndrome and/or
Fibromyalgia, both of which are not considered autoimmune diseases, have been
removed.
The final total responses analyzed = 7,838.
Demographic Profile
All patients surveyed have at least one autoimmune disease. Half (49 percent) reported
having one autoimmune disease, 29 percent two, and 22 percent report having 3 or
more.
Some 82 autoimmune diseases were reported, including:
Acute Disseminated Encephalomyelitis (ADEM)
Addison’s disease
Alopecia areata
Ankylosing spondylitis
Antiphospholipid syndrome (APS)
Autoimmune aplastic anemia
Autoimmune dysautonomia
Autoimmune hepatitis
Autoimmune pancreatitis
Autoimmune thyroid disease
Autoimmune urticaria
Behcet’s disease
Bullous pemphigoid
Celiac disease
Chronic inflammatory demyelinating
polyneuropathy (CIDP)
Crohn’s disease
CREST disease
Demyelinating neuropathies
Dermatitis herpetiformis
Dermatomyositis
Discoid lupus
Endometriosis
Eosinophilic esophagitis
Eosinophilic fasciitis
Erythema nodosum
Granulomatosis with Polyangiitis (GPA)
(formerly called Wegener’s Granulomatosis)
Graves’ disease
Guillain-Barre syndrome
Hashimoto’s thyroiditis
Hemolytic anemia
Herpes gestationis
Hypogammaglobulinemia
Idiopathic thrombocytopenic purpura (ITP)
IgA nephropathy
IgG4-related sclerosing disease
Interstitial cystitis
Juvenile arthritis
Juvenile diabetes (Type 1 diabetes)
Lambert-Eaton syndrome
Leukocytoclastic vasculitis
Lichen planus
Lichen sclerosus
Lupus (SLE)
Lyme disease, chronic
Meniere’s disease
Microscopic polyangiitis
Mixed connective tissue disease (MCTD)
Multiple sclerosis
Myasthenia gravis
Myositis
Narcolepsy
Neuromyelitis optica (Devic’s)
Neutropenia
Palindromic rheumatism
PANDAS (Pediatric Autoimmune
Neuropsychiatric Disorders Associated with
Streptococcus)
Paroxysmal nocturnal hemoglobinuria (PNH)
Pemphigus
Peripheral neuropathy
Pernicious anemia
Polymyalgia rheumatica
Polymyositis
Primary biliary cirrhosis

4. FINAL Autoimmune Disease and Fatigue: Patients Speak Survey Executive Summary - Page 4
Psoriasis
Psoriatic arthritis
Raynauds phenomenon
Reiter’s syndrome
Relapsing polychondritis
Rheumatoid arthritis
Sarcoidosis
Scleritis
Scleroderma
Sjogren’s syndrome
Stiff person syndrome
Thrombocytopenic purpura (TTP)
Transverse myelitis
Type 1 diabetes
Ulcerative colitis
Undifferentiated connective tissue disease
(UCTD)
Uveitis
Vasculitis
Vitiligo
Almost all survey respondents were female, many of whom (46%) are in their child-
bearing years.
GENDER BREAKDOWN
Female 95 percent
Male 5 percent
AGE BREAKDOWN
Under 21 2 percent
21-34 17 percent
35-44 29 percent
45-54 28 percent
55-64 18 percent
65+ 5 percent
No Answer 1 percent

5. FINAL Autoimmune Disease and Fatigue: Patients Speak Survey Executive Summary - Page 5
KEY SURVEY FINDINGS
I. Profound, debilitating fatigue is real symptom for many autoimmune disease
patients.
● 98 percent of autoimmune disease patients surveyed report they suffer from fatigue.
● 89 percent said fatigue is a major issue for them.
● When asked which statement better described their
fatigue, 68 percent said their “fatigue is anything but
normal. It is profound and prevents [them] from doing the
simplest everyday tasks.” Another 24 percent described
their fatigue as “like a normal tiredness.”
● 59 percent of autoimmune patients said that fatigue is
probably the most debilitating symptom of having an
autoimmune disease.
II. Fatigue impacts nearly every area of a patient’s life.
● From their relationships to their quality of life to their ability to work and have a career,
autoimmune patients report fatigue’s impact on their lives.
THE IMPACT OF FATIGUE ON AUTOIMMUNE DISEASE PATIENTS
Does your fatigue impact your: Yes No Don’t
Know/
No Answer
Overall Quality of Life 89 percent 10 percent 1 percent
Career/Ability to Work 78 percent 18 percent 4 percent
Romantic Relationships 78 percent 15 percent 7 percent
Family Relationships 74 percent 23 percent 3 percent
Sense of Self Esteem 69 percent 28 percent 3 percent
Professional Relationships 65 percent 24 percent 11 percent
Finances 61 percent 32 percent 7 percent
Parenting Abilities 47 percent 27 percent 26 percent
“Fatigue is probably the
most debilitating
symptom of having a[n
autoimmune] disease.”
- Autoimmune Disease
Patient
“Life as I knew it no longer exists.”
- Autoimmune Disease Patient

6. FINAL Autoimmune Disease and Fatigue: Patients Speak Survey Executive Summary - Page 6
III. Fatigue is not fully recognized nor treated by patients’ physicians.
● 87 percent of autoimmune patients reported they have discussed their fatigue with
their doctor.
● Those who have report mixed responses from their doctors. However, nearly six-in-
10 autoimmune disease patients said their doctors have not treated their fatigue.
AUTOIMMUNE PATIENTS ON EXPERIENCE WITH DOCTORS WHEN REPORTING
FATIGUE SYMPTOMS
Did the doctor: Yes No Don’t
Know/
No
Answer
Take your fatigue seriously 48 percent 40 percent 12 percent
Understand the extent of your fatigue 36 percent 46 percent 18 percent
Prescribe or suggest treatment options for your
fatigue
37 percent 59 percent 4 percent
IV. Friends and family don’t understand the depth of patients’ fatigue.
● 90 percent of autoimmune patients reported having discussed their fatigue with family
and friends.
● Of those who have, many felt misunderstood.
AUTOIMMUNE PATIENTS ON FAMILY AND FRIENDS REACTION
TO THEIR FATIGUE
Did your family and friends: Yes No Don’t
Know/
No Answer
Take your fatigue seriously 49 percent 38 percent 13 percent
Understand the extent of your fatigue 23 percent 66 percent 11 percent
● When asked if they believe others judge them negatively because of their fatigue, 70
percent of autoimmune patients said yes.
“It's difficult for other people to understand our ongoing fatigue when it can't be seen by
them. It's so hard just trying to get others to really, really understand just how very tired
you are sometimes. Even our own doctors often don't understand. One wonders if even
our doctors may think we are for the most part just mental cases and/or whiners.”
- Autoimmune Disease Patient

7. FINAL Autoimmune Disease and Fatigue: Patients Speak Survey Executive Summary - Page 7
V. Fatigue results in some degree of economic hardship for autoimmune disease
patients and their families.
● 75 percent of autoimmune disease patients said their fatigue has impacted their ability
to work.
● When asked if they or their family are in financial distress as a result of their
autoimmune disease-related fatigue, patients’ responses were split roughly 60/40, with
55 percent who said “no” and 37 percent “yes.”
● 72 percent reported that fatigue has not caused them to lose their job; 21 percent said
it has.
● 75 percent said they have not filed for disability as a result of their fatigue; 21 percent
said they have.
“When having those "autoimmune days" as I call them, it's
terrifying at times. I worry about how this will affect my ability
to do the high stress work that I do and what will happen to
me if there comes a time when I get really sick. It's scary
because in order to take care of myself, I'd have to slow down
and I can't afford to do that - and I mean that both financially
AND in terms of me not having any idea how to "slow down"
because it's not who I am. I worry about losing myself if this
gets worse.”
- Autoimmune Disease Patient

8. FINAL Autoimmune Disease and Fatigue: Patients Speak Survey Executive Summary - Page 8
VI. Fatigue has an impact on autoimmune patients’ mental and emotional well-
being.
● Autoimmune patients reported that their fatigue has resulted in increased emotional
distress, a sense of isolation, anxiety and depression.
FATIGUE’S IMPACT ON EMOTIONAL WELL BEING OF AUTOIMMUNE PATIENTS
Has your fatigue resulted in: Yes No Don’t
Know/
No Answer
Increased Emotional Stress 88 percent 10 percent 2 percent
Sense of Isolation 76 percent 21 percent 3 percent
Anxiety 72 percent 24 percent 4 percent
Depression 69 percent 25 percent 6 percent
● However, only 29 percent said they have sought professional mental health treatment
as a result of their fatigue; 68 percent said they have not.
● When asked if their primary care doctor had suggested they contact a mental health
professional as a result of their fatigue, 80 percent said no.
* * * *
About American Autoimmune Related Diseases Association
American Autoimmune Related Diseases Association (AARDA) is the nation's only non-profit organization
dedicated to bringing a national focus to autoimmunity as a category of disease and a major women's
health issue, and promoting a collaborative research effort in order to find better treatments and a cure for
all autoimmune diseases. For more information, please visit www.aarda.org.
Follow us on social media, including:
Facebook (www.facebook.com/Autoimmunity)
Twitter (@AARDATweets)
YouTube (www.youtube.com/AARDATube)
“One day at a time is what I'm learning to accept. It's still so hard wanting to have our
life the way it was. I am in a battle with the mind and emotions thinking about what has
been taken and then being grateful for what I still have.”
- Autoimmune Disease Patient