Segawa syndrome

We’re all in this for good.

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 Segawa syndrome?

Segawa syndrome is a rare genetic disorder due to mutations of the GCH-1 gene. It is characterized by an uncoordinated manner of walking and involuntary muscle contractions (dystonia) which are usually worse in the afternoon and night than in the morning, which is characteristic of Segawa syndrome.

Common symptoms reported by people with Segawa syndrome

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 with Segawa syndrome

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

(Sinemet)
Type
Prescription Drug
How many have tried
1
Tried for
Segawa syndrome (1)

Data from patients with Segawa syndrome, who reported starting treatments within the last 5 years.
Last updated:

Compare treatments taken by people with Segawa syndrome

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

(Sinemet)
Perceived effectiveness
for Segawa syndrome (1 evaluation)
Side effects
dizziness and feeling faint
Total evaluations
1
Tried for
Segawa syndrome (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with Segawa syndrome, who reported starting treatments within the last 5 years.
Last updated:

Who has Segawa syndrome on PatientsLikeMe?


Age
Age Proportion # of patients
<20 0
20s 0
30s 0
40s 1
50s 1
60s 0
70+ 0
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 0
20-29 years 1
30-39 years 0
40-49 years 0
50-59 years 0
60-69 years 0
70+ years 0

Sex

Distribution of sex

50% Female
50% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 1
Not Diagnosed 0

These charts show data from Segawa syndrome patients who have completed their condition history
Last updated:
No data

Let’s build this page together! When you share what it’s like to have Segawa syndrome through your profile, those stories and data appear here too.

Got a question about living with Segawa syndrome? Members in the forum might have the answers.