Myelofibrosis

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By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

What is myelofibrosis?

Myelofibrosis is a rare but serious bone marrow disorder characterized by bone marrow fibrosis, enlarged spleen, and anemia. Myelofibrosis can occur on its own (primary myelofibrosis) or it can occur as a result of another bone marrow disorder (secondary myelofibrosis).

Common symptoms reported by people with myelofibrosis

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 myelofibrosis

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

(Jakafi)
Type
Prescription Drug
How many have tried
2
Tried for
myelofibrosis (2)
Treatment name(s)
Type
Prescription Drug
How many have tried
1
Tried for
myelofibrosis (1)

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

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

(Jakafi)
Perceived effectiveness
for myelofibrosis (1 evaluation)
Side effects
headaches tension headache
Total evaluations
3
Tried for
myelofibrosis (2)
Treatment name(s)
Perceived effectiveness
for myelofibrosis (1 evaluation)
Side effects
nephronophthisis
Total evaluations
1
Tried for
myelofibrosis (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

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


Age
Age Proportion # of patients
<20 0
20s 4
30s 2
40s 8
50s 10
60s 15
70+ 18
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1
20-29 years 1
30-39 years 5
40-49 years 4
50-59 years 4
60-69 years 3
70+ years 2

Distribution of sex

Sex
Sex Proportion # of patients
Male 21
Female 39

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 30
Not Diagnosed 5

These charts show data from myelofibrosis patients who have completed their condition history
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