What Causes the Challenges of Living with SCD

Living with sickle cell disease can affect people and their families
medically, physically, socially, and emotionally.
They are called Sickle Cell Warriors because they are in a brave, ongoing battle
with a serious condition.
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Medical Challenges

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Physical Symptoms and Challenges

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Social Challenges

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Emotional Challenges

Sickle Cell Disease Can Affect A Person’s Life MEDICALLY.

What to know:

1. Sickle cell disease can cause very severe pain and a number of serious complications.

2. Some people have certain complications. Some people have other complications.

3. Some people have many complications. Some people have few complications.

4. Each person is different.

5. It is a condition that can be treated.

6. For some people, it is a condition that can even be cured.

7. With skilled and compassionate medical care, people can live fulfilling lives.

  • • Acute chest syndrome
  • • Aplastic crisis
  • • Blood clots
  • • Chronic (long-term) pain
  • • Delayed growth
  • • Delayed puberty
  • • Enlarged spleen
  • • Eye problems
  • • Gallstones
  • • Heart problems
  • • Infections
  • • Joint problems
  • • Kidney problems
  • • Leg ulcers
  • • Liver problems
  • • Pain crises
  • • Pregnancy problems
  • • Priapism
  • • Silent brain injury
  • • Splenic sequestration crisis
  • • Stroke
  • • Vitamin deficiency

Source: United States Department of Health and Human Services (U.S. DHHS),
National Institutes of Health (NIH) - National Heart, Lung, and Blood Institute (NHLBI). Read Here (New Tab)

Sickle Cell Disease Can Affect a Person’s Life PHYSICALLY

A few issues to be aware of:

• When a person’s sickle blood cells die, a yellow substance called bilirubin is released into the bloodstream.

• This is what causes the whites of a person‘s eyes to be yellow, from time to time.

• The medical term for it is “jaundice.”

Others may notice the yellowing of the eyes. People with sickle cell disease may, then, have to deal with:

• people teasing them

• people making incorrect assumptions about their condition

• people just asking questions and expecting answers.

This can be hurtful, embarrassing, or just tiresome.

• When a person’s sickle red blood cells die, there are not enough healthy red blood cells to carry oxygen throughout the body.

• This causes a person to feel very tired. The medical term for it is “fatigue.”

For some people, extreme tiredness can sometimes make it hard for a person to:

• get work done

• do well in school

• do well at work

• engage in important or fun social occasions.

Many Sickle Cell Warriors look very healthy and seem to be doing quite well.

• This is an advantage when it comes to being accepted as a student, a coworker, or just another member of society.

• But this can cause problems when a doctor, nurse, or anyone else does not take a person’s medical needs seriously.

• Many people with sickle cell disease manage to forge ahead in life, in spite of the problems they face.

• They still need our understanding, our respect, and our support.

Sickle Cell Disease Can Affect a Person’s Life SOCIALLY and EMOTIONALLY.

These are some of the situations and experiences that can make life more difficult than it needs to be.

• Battle #1: Simply having the disease
• Battle #2: Dealing with people’s negative beliefs and actions
• Battle #3: Living in a place where medical care and/or dedicated advocacy is scarce