Huntington's disease

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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 Huntington's disease?

Huntington disease, an autosomal dominant disorder, is a progressive, neurodegenerative disease characterized by insidious onset of incoordination, personality changes, and psychiatric symptoms leading to severe dementia and immobility.

Common symptoms reported by people with Huntington's 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.
Last updated:

Treatments taken by people for Huntington's disease

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

(Xenazine)
Type
Prescription Drug
How many have tried
92
Tried for
Huntington's disease (1)

Data from patients with Huntington's disease, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
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Compare treatments taken by people with Huntington's disease

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

(Xenazine)
Perceived effectiveness
for Huntington's disease (1 evaluation)
Side effects
Total evaluations
1
Tried for
Huntington's disease (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with Huntington's disease, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
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Who has Huntington's disease on PatientsLikeMe?

  • 18 new patients joined this month
  • 1143 say Huntington's disease is their primary condition

Age
Age Proportion # of patients
<20 3
20s 41
30s 184
40s 280
50s 277
60s 178
70+ 78
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 12
20-29 years 30
30-39 years 52
40-49 years 37
50-59 years 12
60-69 years 8
70+ years 1

Distribution of sex

Sex
Sex Proportion # of patients
Male 320
Female 727

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 202
Not Diagnosed 29

These charts show data from Huntington's disease patients who have completed their condition history
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