SWAN

What is 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. SWAN is also referred to as an unknown or undiagnosed genetic condition. 

Around 6,000 children in the UK are born with an undiagnosed condition and many remain undiagnosed throughout their life. Many families will wait years to get a diagnosis for Syndrome Without a Name. Though, most are undergoing genetic testing and research studies to help them gain more of an understanding of themselves. 

Symptoms of SWAN

Every SWAN child is different, meaning that each child will have different symptoms and be affected by their condition differently. Some children that are affected may have learning disabilities, physical disabilities or complex medical issues.  It is common for children with the syndrome to have more than one of these symptoms. Due to this, many children affected are sometimes described as having global developmental delay or a failure to thrive.

Why are some children undiagnosed?

Syndrome Without A Name can be hard for parents and families when a child or adult’s condition is undiagnosed for a long period of their life. It can be hard to receive answers on why their child is ill.  However, there are a few reasons why it can take a long time to diagnose children with SWAN symptoms.

• Their condition could be extremely rare so it has never been seen before or tested for.
• It seems similar to a known condition but the person displaying unusual or different symptoms.
• A child’s symptoms of a condition may not display until they are older. 

Additional symptoms that may be identified in children:  

• Respiratory issues – Refers to difficulties breathing. This may also include wheezing, coughing,  chest pain and tiredness. 
• Feeding difficulties – This can include problems with swallowing or choking meaning some children with SWAN symptoms may need to be tube fed.
• Hypertonia or hypotonia – Refers to abnormal muscle tone. Children may suffer from an increase in muscle tone (hypertonia) which causes stiffness and difficulty in movement. Hypotonia refers to a decrease in muscle tone which causes poor coordination and weak strength. 
• Hypermobility or hypomobility –Refers to problems with range of motion within joints. If a child has hypermobility, they have a greater range of motion in their joints which can make them more prone to injury. A person with hypomobility may suffer from stiffness and pain. 
• Dysmorphic or unusual features – This may affect the appearance of a person with SWAN or a body part.

How can Tree of Hope help?

Children with learning and physical disabilities and complex medical issues often need specialist care, some of 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.