Hailey-Hailey disease

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  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

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What is Hailey-Hailey disease?

Hailey-Hailey Disease or Familial benign pemphigus is a rare skin condition characterized by blisters and lesions most often occur in folds of skin, such as the neck, armpits, and/or genitals. Exposure to heat, sweat, and friction cause the skin problems to worsen.

Common symptoms reported by people with Hailey-Hailey 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.
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Treatments taken by people with Hailey-Hailey disease

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

(Low Dose Naltrexone (LDN))
Type
Prescription Drug
How many have tried
1
Tried for
fatigue (1) Hailey-Hailey disease (1)
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)

Data from patients with Hailey-Hailey disease, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with Hailey-Hailey disease

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

(Low Dose Naltrexone (LDN))
Perceived effectiveness
for fatigue (2 evaluations)
Side effects
better sleep
Total evaluations
2
Tried for
fatigue (1) Hailey-Hailey disease (1)
Treatment name(s)

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

Data from patients with Hailey-Hailey disease, who reported starting treatments within the last 5 years.
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Who has Hailey-Hailey disease on PatientsLikeMe?


Age
Age Proportion # of patients
<20 0
20s 2
30s 2
40s 4
50s 3
60s 3
70+ 2
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 1
20-29 years 3
30-39 years 1
40-49 years 0
50-59 years 1
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 5
Female 12

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

These charts show data from Hailey-Hailey disease patients who have completed their condition history
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