Sickle cell disease

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What is sickle cell disease?

Sickle cell disease is an inherited blood disorder that affects red blood cells (RBC), which contain mostly hemoglobin S, an abnormal type of hemoglobin. Sometimes these RBCs become crescent shaped and have difficulty passing through small blood vessels.

Common symptoms reported by people with sickle cell disease

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
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Treatments taken by people with sickle cell disease

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Hydrea)
Type
Prescription Drug
How many have tried
2
Tried for
sickle cell disease (2)
Treatment name(s)
Type
Procedures
How many have tried
1
Tried for
sickle cell disease (1)
Treatment name(s)

(Actiq)
Type
Prescription Drug
How many have tried
1
Tried for
Pain (1)
Treatment name(s)

(Deltasone)
Type
Prescription Drug
How many have tried
1
Tried for
sickle cell disease (1)
Treatment name(s)

(Permobil C300)
Type
Equipment
How many have tried
1
Tried for
fatigue (1)

Data from patients with sickle cell disease, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with sickle cell disease

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Hydrea)
Perceived effectiveness
for sickle cell disease (1 evaluation)
Side effects
hair loss itching 1 more
Total evaluations
1
Tried for
sickle cell disease (2)
Treatment name(s)
Perceived effectiveness
for sickle cell disease (1 evaluation)
Side effects
difficulty waking up generalized weakness (asthenia) 4 more
Total evaluations
1
Tried for
sickle cell disease (1)
Treatment name(s)

(Actiq)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
Pain (1)
Treatment name(s)

(Deltasone)
Perceived effectiveness
No evaluations
Side effects
emotional sensitivity exhaustion 2 more
Total evaluations
2
Tried for
sickle cell disease (1)
Treatment name(s)

(Permobil C300)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
fatigue (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with sickle cell disease, who reported starting treatments within the last 5 years.
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Who has sickle cell disease on PatientsLikeMe?


Age
Age Proportion # of patients
<20 15
20s 17
30s 30
40s 26
50s 13
60s 8
70+ 0
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 28
20-29 years 2
30-39 years 2
40-49 years 0
50-59 years 0
60-69 years 0
70+ years 0

Sex

Distribution of sex

72% Female
28% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 42
Not Diagnosed 2

These charts show data from sickle cell disease patients who have completed their condition history
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