Barriers to accessing medical care for children with Ehlers Danlos Syndrome

Ehlers Danlos Syndrome is a connective tissue disorder, in extreme cases it can affect the vascular system (vascular EDS). EDS is a genetic condition that often runs in families and there remains no cure, only symptom management. EDS in children can lead to false allegations of Non Accidental Injury (NAI) due to high incidence of fractures and bruising (particularly in non mobile infants). EDS also attracts false allegations of Fabricated and Induced Illness (FII) due to it being an "invisible illness" this is particularly perplexing in those who have proof of EDS through genetic testing. I recently did a survey on Barriers to education in children with EDS which showed massive failings in the education system, children being failed and families being attacked with false allegations of fii. In response to feedback i compiled this follow up survey on barriers to accessing NHS healthcare for children with EDS and received 170 responses. This is, as usual, a self selecting survey, shared around social media in EDS groups and general SEND groups. Does your child have a diagnosis? 168 respondents, 57.1% EDS, 18.5% Hypermobility syndrome 10.1% hypermobility 14.3% no official diagnosis