Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Pauline Latham Excerpts

Wednesday 22nd May 2024 Westminster Hall

[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.

[Mrs Pauline Latham (Mid Derbyshire) (Con)]

This is an important debate and many people, as my hon. Friend has said, do not know about Ehlers-Danlos syndrome or its diagnosis. Another complication, which he did not mention, is aortic dissection. People with Ehlers-Danlos syndrome can suffer from that and it can be deadly. One of my constituents has Ehlers-Danlos syndrome, but it took 30 years to diagnose. At one point, she was under 11 different consultant teams. Both her sons have the same symptoms, yet they cannot access diagnosis or service. Over those 30 years, there has been no improvement in our care. I hope that when the Minister responds, he will be able to give some hope to the people who suffer from this syndrome.

[Andrew Selous]

I am grateful to my hon. Friend, because it is these individual stories that really make the case. My hon. Friend’s constituents had to wait 30 years: that is a very long time indeed.