What is phenylketonuria?

Phenylketonuria (PKU) is a genetic disorder in which the body can't process part of a protein called phenylalanine (Phe). Phe is in almost all foods. If the Phe level gets too high, it can damage the brain and cause severe mental retardation.

How do members experience phenylketonuria?

Top 5 symptoms reported by people with phenylketonuria*

*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.

Top treatments taken by people for phenylketonuria*

*Data from patients with phenylketonuria, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.

Compare treatments taken by people with phenylketonuria*

Treatment
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
phenylketonuria (1)

*Data from patients with phenylketonuria, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.

Who has phenylketonuria on PatientsLikeMe?

Age

Age Proportion # of patients
<20 5
20s 6
30s 5
40s 7
50s 3
60s 2
70+ 0

Distribution of sex

Sex

Sex Proportion # of patients
Male 9
Female 18

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What is phenylketonuria?

Phenylketonuria (PKU) is a genetic disorder in which the body can't process part of a protein called phenylalanine (Phe). Phe is in almost all foods. If the Phe level gets too high, it can damage the brain and cause severe mental retardation.



Common symptoms reported by people with phenylketonuria

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 phenylketonuria

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)
Type
Nutrition/Diet
How many have tried
15
Tried for
phenylketonuria (1)

Data from patients with phenylketonuria, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
Last updated:


Compare treatments taken by people with phenylketonuria

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
phenylketonuria (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with phenylketonuria, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
Last updated:



Who has phenylketonuria on PatientsLikeMe?

  • 0 new patients joined this month
  • 20 say phenylketonuria is their primary condition

Age
Age Proportion # of patients
<20 5
20s 6
30s 5
40s 7
50s 3
60s 2
70+ 0
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 2
20-29 years 0
30-39 years 0
40-49 years 0
50-59 years 0
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 9
Female 18

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 3
Not Diagnosed 0

These charts show data from phenylketonuria patients who have completed their condition history
Last updated: