Barth Syndrome Trust logo
Home
About BST
Clinicians
Resources
NHS Service & Clinic
Get involved
International
Join our Registry
In memory
Useful links
Research Grants
Donate
Jeans for Genes
Contact us
A A A
SEARCH  

Saving lives through education, advances in treatment and finding a cure for Barth syndrome

Barth Syndrome Trust image

Barth Syndrome Trust image

 

Muscle weakness, tiredness and exercise intolerance

Children with heart problems often find it tiring to feed but, in addition to this, a baby with Barth syndrome may also be quite floppy and tire easily because of muscle weakness. Some boys are late to crawl, walk or run and may struggle to get up from sitting (a positive Gower’s sign). Physiotherapy and occupational therapy are advised from a very early age to help reach milestones.

 

Many boys have “flat feet” and find it helps to get inserts for their shoes or special little boots to help them walk. Some may like a frame to provide more stability. Be reassured that all boys eventually walk when they’re ready. 

 

There is no evidence of any major cognitive damage, with most boys living “normal” lives, though they are often hampered by a lack of stamina. When older, they may find it difficult to run or play sport due to exercise intolerance but younger boys usually follow an adapted PE curriculum and usually enjoy this tremendously.

Barth Syndrome Trust graphic

Contact us

Medical emergency or just need to talk.

 

Get in touch!

Barth Syndrome Trust graphic
Barth Syndrome Trust graphic
 
Barth Syndrome Trust graphic