Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Debate
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Peter Dowd
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Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders
Peter Dowd Excerpts(6 months ago)
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Peter Dowd (in the Chair)
Before I call Andrew Selous to move the motion, I will give a little clarity. As is the convention for a 30-minute debate, there will not be an opportunity for the Member in charge of the debate to wind up, but we have a spare 10 minutes and the previous debate finished a bit early, so there will be a little more flexibility—but do not abuse that. A couple of Members want to intervene or speak, so there is some flexibility, at the discretion of the Member in charge and the Minister, to bear that in mind.
Andrew Selous (South West Bedfordshire) (Con)
I beg to move,
That this House has considered the Major Conditions Strategy and people with Ehlers-Danlos syndrome and hypermobility spectrum disorders.
I am delighted to serve under your chairmanship, Mr Dowd. I am extremely grateful to colleagues across the House who have turned up to attend this important debate. We understand that anywhere between 135,000 and up to 300,000 people in the United Kingdom have Ehlers-Danlos syndrome. Those are only the diagnosed ones, and we think that that is the tip of the iceberg. If we take that higher number, in rough terms, that is about 460 per constituency for all of us—that is only those with a known diagnosis.
I am grateful to Dr Emma Reinhold, who is herself a GP no longer able to work because she has EDS. She sent me this quote by Professor Rodney Grahame, who is well respected in the field:
“No other condition in the history of modern medicine has been neglected in such a way as Ehlers-Danlos syndrome.”
Ehlers-Danlos syndrome is a group of 13 genetic disorders in which connective tissue is abnormal. That results in fragile and hyperextensible tissues throughout the body, which can lead to a range of very debilitating symptoms. The effect on the body is widespread and not limited to one body system, as connective tissue is everywhere in our bodies. It is a complicated condition and can come with many comorbidities, which can include pain, gut issues, nutrition, cardiovascular autonomic dysfunction, postural tachycardia syndrome, low blood pressure, mast cell issues, musculoskeletal issues, and head and neck issues. Special considerations for children and women’s health, and anaesthetic and surgical considerations are issues as well. EDS can lead to physical disability and reduced quality of life. Some rarer types can be life-limiting. Hypermobility spectrum disorders have similar symptoms to the most common type of EDS, and are treated in the same way.
I am very grateful to Ehlers-Danlos Support UK; I publicly acknowledge the support it has given me for this debate. It supports people across the United Kingdom who live with Ehlers-Danlos syndrome and hypermobility spectrum disorders. It is a wonderful charity and has been a big driver behind the debate. It wants us to come here and make a difference, and that is my plea to the Minister.