Rethink Sickle Cell Disease

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The impact sickle cell disease has on you

The impact
sickle cell disease
has on you

The impact sickle cell disease has on you

The Impact of Sickle Cell Disease:
A Global Survey

S W A Y
The Sickle Cell World Assessment Survey
One of the
Largest
Global
Surveys in SCD
16 Countries
Enrolled
More than 2100 People
With SCD Surveyed
To Improve Quality
of Life and Disease
Management
Select a box below to learn more:
Physical
Symptoms
Physical Symptoms
90%
of people had at least
1 pain crisis
in the past year
Daily
Activities
Daily Activities
38%
of people said
sickle cell disease
impacted their daily
home activities
Emotional
Life
Emotional Life
59%
of people felt
frustrated with
their symptoms
Work
and School
Work and School
53%
believed their income
would be higher
if they did not have
sickle cell disease

Sickle cell disease and pain crises can affect your body, mind, and overall life

Sickle cell disease and pain crises can lead to acute and chronic complications such as organ damage and organ failure.

Select an icon below to learn more:

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Human body
Sudden, intense pain
Chest complication
Chest complication
Kidney disease
Damage to hip bones
Damage to blood vessels of eyes
Mental health
Prolonged erections in men
Prolonged erections in men
Leg wounds
human body
Sudden, intense pain
Chest complication
Chest complication
Kidney disease
Damage to hip bones
Damage to blood vessels of eyes
Mental health
Prolonged erections in men
Prolonged erections in men
Leg wounds

SUDDEN, INTENSE PAIN

Pain crisis or vaso-occlusive crisis

STROKE

Silent or clinical stroke or cerebral infarction
[suh-ree-bruhl in-fahrk-shuhn]

LUNG DISEASE

Acute chest syndrome

KIDNEY DISEASE

Renal dysfunction or failure

DAMAGE TO THE HIP BONES

Avascular necrosis
[a-vas-kyuh-ler nuh-kroh-sis]

DAMAGE TO THE BLOOD VESSELS
OF YOUR EYES

Retinopathy
[ret-n-op-uh-thee]

Increased risk of depression; anxiety; difficulty with
mental tasks

Mental health

Men: PROLONGED Painful ERECTIONS

Priapism [pry-uh-piz-uhm]

Women: pain crises occurring at the same time as MENSTRUAL cycle

Pain crisis during menstruation
[men-stroo-ey-shuh-n]

Leg wounds

Leg ulcer

human body
human body
Sudden, intense pain
Stroke
Chest complication
Kidney disease
Damage to hip bones
Sudden, intense pain
Stroke
Chest complication
Kidney disease
Damage to hip bones
human body
human body
Damage to blood vessels of eyes
Mental health
Prolonged erections in men
Prolonged erections in men
Leg wounds
Damage to blood vessels of eyes
Mental health
Prolonged erections in men
Prolonged erections in men
Leg wounds

Other health issues, such as infections, cardiac dysfunction, hepatic dysfunction, and splenic dysfunction may occur in the body as well.

Despite these serious health risks, 68% of pain crises in the Netherlands, for example, are managed at home. It is important that you seek the medical care you need. Be sure to keep track of pain crises and tell a doctor about every pain crisis you or your child has. He or she can help come up with a game plan that may aid you in better managing any future pain crises.

Sickle cell disease can affect emotional life, but many people still lead productive lives

People with sickle cell disease may experience:

Depression
Depression

Depression

Up to 30% of people with sickle cell disease have depression

Anxiety
Anxiety

Anxiety

Up to 10% of people with sickle cell disease experience anxiety

Fatigue
Fatigue

Fatigue

People with sickle cell disease may experience fatigue

Difficulty learning and paying attention
Difficulty learning and paying attention

Difficulty learning and paying attention

People with sickle cell disease are at greater risk of these challenges

Difficulty sleeping or insomnia
Difficulty sleeping or insomnia

Difficulty sleeping

People with sickle cell disease are at greater risk for sleep difficulties

Sickle cell disease and pain crises can affect your work, school, and social life

Remember, you are not alone. Despite the effects that sickle cell disease can have on health, many people continue to lead full lives.

See tips on how you or your loved ones can have a better conversation with your health care provider
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Physical symptoms and pain crises
Physical symptoms and pain crises 90%
of people had at least 1 pain crisis
in the past year
39% had 5 or more pain crises
How pain crises were managed
Of more than 11,000 pain crises reported
  • Only about 1 in 3 were treated with a hospital stay
  • Fewer than 1 in 4 were treated in the emergency room, or by a doctor or pharmacist
  • Nearly 1 in 4 were managed at home
Why medical help was not
sought out
Poor hospital experience
in the past
Poor hospital experience in the past
Believe doctors do not understand sickle cell disease
Believe doctors do not understand sickle cell disease
Too painful to seek
medical attention
Too painful to seek medical attention
Don't let past experiences stop you from getting the care you need. Reach out to your doctor whenever you need to. You don't have to endure a pain crisis alone.
Know more. Do more. Together. Don't let past experiences stop you from getting the care you need. Reach out to your doctor whenever you need to. You don't have to endure a pain crisis alone.
If you have sickle cell disease, helpful resources are available
If you have sickle cell disease, helpful
resources are available
— Emmanuel, 41, United Kingdom
I want fellow sickle cell patients to know that they
are not suffering alone and that I feel their pain.
— Emmanuel, 41,
United Kingdom
end
close
Sickle cell disease has a high impact on daily activities for many people
61% Avoid intense activity 61% Avoid intense activity
61%
Avoid intense
activity
58% Pain during exercise 58% Pain during exercise
58%
Pain during
exercise
55% Exhaustion during exercise 55% Exhaustion during exercise
55%
Exhaustion
during exercise
47% Dehydration during exercise 47% Dehydration during exercise
47%
Dehydration
during exercise
41% Family/social life 41% Family/social life
41%
Family/social life
38% Daily home activities 38% Daily home activities
38%
Daily home activities
32% Relationship with spouse/partner 32% Relationship with spouse/partner
32%
Relationship with
spouse/partner
31% Sexual desire/activity 31% Sexual desire/activity
31%
Sexual desire/activity
26% Avoid mild activity 26% Avoid mild activity
26%
Avoid mild activity
Know more. Do more. Together. Learning ways to take care of your health can help you manage daily challenges and reach your goals.
If you have sickle cell disease, helpful resources are available
If you have sickle cell disease, helpful resources are available
— Nana, 25, Ghana
Nothing should limit you, whether you are a person living
with sickle cell disease or not.
— Nana, 25, Ghana
end
close
Sickle cell disease has a powerful effect on emotional life
59%
of people felt frustrated with their symptoms

Other commonly mentioned concerns included:

Most people felt positive and empowered Most people felt positive and empowered
Most people felt positive and empowered
I can maintain a healthy lifestyle during stress
I can maintain a
healthy lifestyle
during stress”
Taking an active role in my health care is the most important<br>thing for my health
Taking an active role
in my health care is
the most important
thing for my health”
I am responsible for taking care of<br>my health
I am responsible
for taking care of
my health”
Know more. Do more. Together. When you're feeling low, try to think about what empowers you to stay positive while managing your sickle cell disease.
If you have sickle cell disease, helpful resources are available
If you have sickle cell disease, helpful resources are available
— Manahil, 36, Bahrain
Always remember to enjoy your life.
Nothing can stop your dreams.
— Manahil, 36, Bahrain
end
close
Sickle cell disease has a high impact on work and school
53%
believe their income would be higher if they did not have sickle cell disease

Other commonly mentioned concerns included:

>More than 1 day of work is missed every week, on average >More than 1 day of work is missed every week, on average
More than 1 day of work is missed every week, on average
Find out more: French guidelines on sickle cell disease in the workplace
51%
of students reported sickle cell disease impacted their achievement at school
Find out more: United Kingdom guidelines on sickle cell disease and school policy Find out more: United Kingdom guidelines on sickle cell disease and school policy
Find out more:
United Kingdom guidelines on sickle cell disease and school policy
Know more. Do more. Together. Not everyone may understand what you're going through. Consider how communicating your needs can lead to more support at work and school—and may help you address any challenges.
If you have sickle cell disease, helpful resources are available
If you have sickle cell disease, helpful resources are available
— Tartania, 39, USA
Sickle cell disease spurs me to do more, to go forward,
to push myself to be better, and to show people that I can
do it too.
— Tartania, 39, USA
end