Lewy Body 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 Lewy Body Disease?

Dementia with Lewy bodies is characterized by cognitive decline, recurrent visual hallucinations, postural instability, gait difficulties, masked facial expression, rapid eye movement sleep behavioral disorder, and antipsychotic sensitivity.

What is it like to have Lewy Body 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, insomnia, fatigue, and pain) regardless of condition.
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What do patients take to treat Lewy Body Disease and its symptoms?

Treatments reported by members
Perceived effectiveness
Overall rating of side effects
# of Evaluations

These charts show data from Lewy Body Disease patients’ latest treatment evaluations
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  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Who has Lewy Body Disease on PatientsLikeMe?

Age Proportion # of patients
<20 0
20s 0
30s 0
40s 2
50s 7
60s 5
70+ 20


Distribution of females vs. males

32% Females
68% Males
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 0
20-29 years 0
30-39 years 0
40-49 years 3
50-59 years 6
60-69 years 5
70+ years 4

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 19
Not Diagnosed 3

These charts show data from Lewy Body Disease patients who have completed their condition history
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