Pitt-Hopkins 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 Pitt-Hopkins syndrome?

Pitt-Hopkins Syndrome results from a mutation or deletion of a gene on chromosome 18. The syndrome is characterized by intellectual and developmental disability, breathing problems, recurrent seizures, and distinctive facial features.

Common symptoms reported by people with Pitt-Hopkins 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 Pitt-Hopkins syndrome

No data

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

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

Compare treatments taken by people with Pitt-Hopkins syndrome

No data

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

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

Who has Pitt-Hopkins syndrome on PatientsLikeMe?


Age
Age Proportion # of patients
<20 6
20s 1
30s 0
40s 1
50s 0
60s 0
70+ 0
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 4
20-29 years 0
30-39 years 0
40-49 years 0
50-59 years 0
60-69 years 0
70+ years 0

Sex

Distribution of sex

63% Female
38% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 6
Not Diagnosed 0

These charts show data from Pitt-Hopkins 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 Pitt-Hopkins syndrome through your profile, those stories and data appear here too.

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