What is vanishing white matter disease?

Vanishing White Matter Disease (VWM) is an inherited condition; it is a progressive neurological deterioration of the myelin sheath (white matter). It allows for electrical signals to communicate between neurons. Decreased electrical signals disrupt the proper functioning of the nervous system.

How do members experience vanishing white matter disease?

Top 5 symptoms reported by people with vanishing white matter disease*

*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 vanishing white matter disease*

Who has vanishing white matter disease on PatientsLikeMe?

Age

Age Proportion # of patients
<20 2
20s 0
30s 1
40s 4
50s 3
60s 3
70+ 0

Distribution of sex

Sex

Sex Proportion # of patients
Male 4
Female 9

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 vanishing white matter disease?

Vanishing White Matter Disease (VWM) is an inherited condition; it is a progressive neurological deterioration of the myelin sheath (white matter). It allows for electrical signals to communicate between neurons. Decreased electrical signals disrupt the proper functioning of the nervous system.



Common symptoms reported by people with vanishing white matter 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.
Last updated:



Treatments taken by people for vanishing white matter disease

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

Got a question about living with vanishing white matter disease? Members in the forum might have the answers.


Compare treatments taken by people with vanishing white matter disease

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

Got a question about living with vanishing white matter disease? Members in the forum might have the answers.



Who has vanishing white matter disease on PatientsLikeMe?

  • 0 new patients joined this month
  • 10 say vanishing white matter disease is their primary condition

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

Distribution of sex

Sex
Sex Proportion # of patients
Male 4
Female 9

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 4
Not Diagnosed 2

These charts show data from vanishing white matter disease patients who have completed their condition history
Last updated: