Spina bifida

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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 spina bifida?

Spina bifida is a developmental congenital disorder caused by the incomplete closing of the embryonic neural tube. Some vertebrae overlying the spinal cord are not fully formed and remain unfused and open.

Common symptoms reported by people with spina bifida

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 spina bifida

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

(Chinese acupuncture and aravedic herbs)
Type
Procedures
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Xanax)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1)
Treatment name(s)

(Essential Oils)
Type
Other
How many have tried
1
Tried for
anxious mood (1) stress (1)
Treatment name(s)

(Ibuprofen Prescription)
Type
Over the Counter Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Optalgin)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Deplin)
Type
Supplement
How many have tried
1
Tried for
depressed mood (1)
Treatment name(s)
Type
Lifestyle Modification
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Inderal)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1)
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)
Type
Supplement
How many have tried
1
Tried for
pain (1)

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

Compare treatments taken by people with spina bifida

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

(Chinese acupuncture and aravedic herbs)
Perceived effectiveness
for pain (4 evaluations)
Side effects
Total evaluations
4
Tried for
pain (1)
Treatment name(s)

(Xanax)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
anxious mood (1)
Treatment name(s)

(Essential Oils)
Perceived effectiveness
for anxious mood (4 evaluations)
Side effects
Total evaluations
4
Tried for
anxious mood (1) stress (1)
Treatment name(s)

(Ibuprofen Prescription)
Perceived effectiveness
for pain (12 evaluations)
Side effects
upset stomach
Total evaluations
12
Tried for
pain (1)
Treatment name(s)

(Optalgin)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (1)
Treatment name(s)

(Deplin)
Perceived effectiveness
for depressed mood (1 evaluation)
Side effects
food allergy
Total evaluations
1
Tried for
depressed mood (1)
Treatment name(s)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)

(Inderal)
Perceived effectiveness
for anxious mood (2 evaluations)
Side effects
Total evaluations
2
Tried for
anxious mood (1)
Treatment name(s)

(Ultram)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)
Perceived effectiveness
for pain (11 evaluations)
Side effects
Total evaluations
11
Tried for
pain (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

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


Age
Age Proportion # of patients
<20 11
20s 16
30s 43
40s 45
50s 32
60s 12
70+ 5
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 59
20-29 years 3
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 42
Female 126

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 96
Not Diagnosed 1

These charts show data from spina bifida patients who have completed their condition history
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