SWAN

SWAN, Syndrome Without a Name, is not a diagnosis but is a term used for children and adults suffering from symptoms of an undiagnosed condition.

Around 6000 children in the UK are born with an undiagnosed condition and are likely to remain undiagnosed. Though, most are undergoing genetic testing and research studies to help them find out and gain more of an understanding about themselves.

What are the symptoms?

Every SWAN child is different, meaning each child will have different symptoms and be affected differently. It is possible for them to have learning and/or physical disabilities and have complex medical issues. Due to this many children affected by SWAN are sometimes described as having global developmental delay or a failure to thrive.

Some of the symptoms that may be identified are

• Hypertonia or hypotonia – problems with muscle tone
• Hypermobility or hypomobility – problems with joints
• Feeding difficulties, such as problems with swallowing – meaning children may need to be tube fed
• Dysmorphic or unusual features
• Respiratory issues (difficulty breathing)

Why are some children undiagnosed?

It is hard for parents and families when a child or adult’s condition is undiagnosed as it can be harder to receive answers on why their child is ill.  However, there are a few reasons why…

• Their condition is so rare, that it has never been seen before or tested for.
• It seems similar to a known condition but is displaying unusual symptoms.
• Often when genetic testing has taken place, there are changes of no significance. It could be that a change has been inherited from a parent that has not been affected.

How Tree of Hope Can Help?

Children with learning and physical disabilities and complex medical issues often need specialist care, some which may not be available through the UK healthcare system.

Tree of Hope can support you to raise funds for your child’s specialist medical care. This could include equipment, physiotherapy, home adaptations,  treatment and more, that will transform your child’s life.

Contact Georgie in our Family Support Team now on 01892 535525 to discuss your options and talk about starting your fundraising campaign with Tree of Hope.