Click here to read this full article on edpsy.org.uk.

Increasingly Ehlers-Danlos syndromes (EDS) and the closely related Hypermobility Spectrum Disorders (HSD) are being diagnosed in some pupils but very little is known about the impact this has on the pupil, parents/carers and their attainment and attendance in school. 

EDS (previously JHS, Joint Hypermobility syndrome) and HSD are heritable disorders that affect the connective tissue found throughout the body. People with these conditions have connective tissue which is defective but each person can present differently, from being asymptomatic to severely disabled. Connective tissues can be thought of as the cement between bricks holding up a house. Some of the cement is in the right proportions, but some is not, therefore too weak or crumbly to support the building. If the cement is weak that is likely to affect other parts of the building e.g. the electrics and waterworks.

There are around 14 types of EDS, most common is hypermobile EDS (hEDS) and has no genetic test. They are thought to be rare disorders but it is difficult to say how rare as sufferers are often not believed and can go undiagnosed.

How hypermobility disorders present

Often ideas of being ‘double jointed’ come up, however the symptoms of EDS/HSD are much broader and can impact on children’s physical, emotional and psychological development. Pupils may extend their limbs much further than average, dislocating or spraining without previous trauma, and they sometimes do not present as acutely in pain. Some have smooth, velvety skin, or very thin skin and liable to significant bruising without trauma. Other symptoms are less visible like:

• Extreme tiredness
• Reflux
• Stomach pain and spasms not linked to anxiety
• Gastrointestinal issues
• Vascular issues
• Neurological issues
• Dizziness/clumsiness

Drops in blood pressure can cause ‘brain fog’. Pupils can get surges of adrenaline that raise cortisol levels particularly in the co-occurring condition Postural Orthostatic Tachycardia (POTs – this is where there is an abnormal increase in heart rate after standing up) both of which can trigger experiences of anxiety.

Click here to read the rest of this piece, originally published on edosy.org.uk.