My first route was to my own GP. She knew nothing about EDS at all, but was mercifully willing to learn and is marvellous. My daughters had varying experiences. One of them had a local doctor at university who had EDS herself! She was, of course, marvellous. The other daughter had a local GP at university who knew nothing and told her she was simply a student who was out late at night and was reaping the results. Totally useless and very frustrating. The sort of doctor who makes you come home and cry your eyes out. EDS is unfortunately still not generally known by most local doctors.
I then heard on the grapevine that rheumatologists were the people to see. My GP referred me to a rheumatologist at my local hospital. He was South African and had worked with Professor Peter Beighton (who pioneered the Beighton score as a primary diagnostic tool for hypermobility). This was the first medical person I had met who knew more than I did! He confirmed that I met the Beighton score criteria for hypermobility. He then told me there was nothing anyone could do, and that was the end of that! I was left with some knowledge, a partial diagnosis, no published literature I could find, and nowhere to go from there!
There was nothing else for it but to google. Most EDS sufferers become adept at googling for information and end up far more knowledgeable than their medical advisors. They are far more interested in their own bodies than anyone else is. By 2013 a couple of hypermobility units had emerged in UK hospitals and a handful of books had been published.
There was no help offered on the NHS and no alternative but to go private. In January 2013 my daughters and I were diagnosed by Prof Rodney Grahame (a rheumatologist who has pioneered work in hypermobility in the UK for many years. He started The Hypermobility Unit in London in 1997), at the Hospital of St John & St Elizabeth in London .
60 Grove End Road, St. John’s Wood, London NW8 9NH
http://www.thehypermobilityunit.org.uk/
Megabucks. Before you rush for the phone and make an appointment, I ought to whisper that the visit cost £300 each for an hour’s appointment for a diagnosis. We were then offered a physiotherapy consultation at, I think, £150 for one session. We had only one each! After that there was no follow-up and we again felt rather high and dry. We had to think carefully before spending that sort of money – but there was nowhere else to go! I thought it was worth it for a diagnosis I could show the doctor, and it helped to reassure me I wasn’t dreaming all this – the constant problem for those of us with invisible illnesses. I also discovered I had POTS and other problems related to the EDS, which a non-specialist would not have picked up.
It is worth googling hospitals near you which your GP may be able to refer to. In the last couple of years other hospitals have also claimed specialisms (I have no knowledge of these, and I have not seen any publications buy them in the way I have from the Hospital of St John & St Elizabeth). Such as:
The Royal National Hospital for Rheumatic Diseases (Bath). NHS
The Royal National Orthopaedic Hospital (Stanmore). NHS
The Portland Hospital for Women and Children (London. Has an outpatients’ programme for children, ‘Hypermobility and Pain Rehabilitation’). Private
For NHS genetic testing try: EDS Diagnostic Service London North West Healthcare NHS Trust tel. 020 8869 3166 email LNWH-tr.EDSLONDONOFFICE@nhs.net I have been told by others that it is possible to ring up the clinic without a doctor’s referral.
Well-known Ehlers-Danlos specialists in the last few years are:
Professor Rodney Grahame CBE MD FRCP FACP
General rheumatology, hypermobility, Ehlers-Danlos Syndrome and performing arts medicine
Advisor to the Hypermobility Syndrome Association (HMSA)
020 7806 4060 (outpatients). I believe that Prof Grahame has retired now.
Dr Alan J Hakim BA MA MB BChir CCST FRCP
General rheumatology, hypermobility, ankylosing spondylitis and Ehlers-Danlos Syndrome
Advisor to EDS Support UK.
020 7806 4060 (outpatients)
Professor Qasim Aziz FRCS PhD
Gastroenterologist with specialist interest in hypermobility
Medical Board of Ehlers-Danlos Support (EDS UK)
020 7603 2267
Dr Hanadi Kaz-Kaz LRCP LRCS LRCPS MRCP MSc
General rheumatology, hypermobility, Ehlers-Danlos Syndrome and performing arts medicine
020 7806 4060 (outpatients)
Chief Medical Advisor of Ehlers-Danlos Support (EDS UK)
I have been told that Dr Pauline Ho is a rheumatologist at the Manchester Royal Infirmary and the Bupa Spire hospital in Whalley Range, Manchester. She also has EDS herself.
I have been told that Dr Askari is a rheumatologist with expertise in EDS in the midlands. He is based at Oswestry Orthopaedic Hospital, but also sees patients privately at the Nuffield in Shrewsbury.
The third book along, Hypermobility, Fibromyalgia and Chronic Pain, is a compilation of medical articles, some of which are by the above-named specialists. I found this extremely helpful. The fourth book, Living with Hypermobility, by Isobel Knight, is a personal account.
The Ehlers Danlos Syndrome (EDS) national diagnostic service is a specialist service for adults and children who have or are suspected to have a rare type of EDS such as classical, vascular, kyphoscoliotic or periodontal EDS. The service does not see people with a suspected or confirmed diagnosis of hypermobile EDS or hypermobility spectrum disorder (HSD). Instead, people with these conditions may find it more useful to see other specialists who can help with advice about management, such as a local rheumatologist, physiotherapist or a paediatrician. For more information including the referral process please go to:
https://www.lnwh.nhs.uk/EDS-National-Diagnostic-Service
claire-has-ehlers-danlos 
Reading this made me cry. Me and my family have had awful experiences yet I show signs of vEDS. I have an effusion around the heart, hole in the heart, rupturing, hypermobility, massive amounts of pain yet am unable to get the help I need. As apparently, there’s nothing they can do. Would you be able to advise where I can pay for vEDS testing? As we are so desperate. Thank you
LikeLike
Dear Michelle,
I’m so sorry not to have replied before. I’ve been out of action. I’m so very sorry to hear this. Have you found help now? I do hope so. I’ve updated my page if it’s any help. Take care, Claire
LikeLike
Dear Claire,
Your web-site is great and really helpful for people who need help and support navigating what is often a complex diagnostic process for EDS.
I work at the EDS Diagnostic Service London North West Healthcare NHS Trust and we get a lot of enquiries from people who we are not able to help unfortunately as we specialise in rare forms of EDS and require an NHS specialist referral. Would you be able to update your information on us to include a web-link so that the right people are able to find us?
Here is a summary of our service:
The Ehlers Danlos Syndrome (EDS) national diagnostic service is a specialist service for adults and children who have or are suspected to have a rare type of EDS such as classical, vascular, kyphoscoliotic or periodontal EDS. The service does not see people with a suspected or confirmed diagnosis of hypermobile EDS or hypermobility spectrum disorder (HSD). Instead, people with these conditions may find it more useful to see other specialists who can help with advice about management, such as a local rheumatologist, physiotherapist or a paediatrician. For more information including the referral process please go to:
https://www.lnwh.nhs.uk/EDS-National-Diagnostic-Service
Many thanks Claire!
Best wishes
Juliette
___________
Juliette Harris, PhD, MSc
Genetic Counsellor
Ehlers Danlos Diagnostic Service
Based in NW Thames Regional Genetics Centre
Northwick Park & St Marks Hospitals, Level 8V
Watford Road, Harrow, Middlesex, HA1 3UJ
LikeLike
Dear Juliette,
Please forgive my lateness in replying to your kind and helpful comment. That’s a wonderful service, and yes, I will try to put it on my site. Thank you so very much for all you are doing for us EDS-ers. We need all the help we can get. Take care, Claire
LikeLike
Im trying to see a consultant in lincolnshire. Ive been told today it will be 2024 till i can see someone about the pain im in because of my EDS.
Please can you advise on anywhere i can go or see please in lincolnshire.
Thank you
LikeLike
Dear Claire-Louise,
Please forgive my late response. It hasn’t been a good few months for me. Have you tried Ehlers-Danlos Support UK? They have a helpline: 0800 907 8518. Take care, Claire
LikeLike
Thank you. This has been extremely helpful and I will look up the consultants on your list. Myself and my daughter meet the criteria for hEDS ( a podiatrist did assess me and said I was clearly hypermobile) but we’ve not had a formal diagnosis. I get dreadful pain in my upper back linked to slow stomach digestion and emptying. My daughter has a terribly sensitive skin attack on chest that I’ve just found an article that could be a cause of hEDS as she’s seen dermatology and they don’t know why it’s so sensitive!!
LikeLike
do you have any update to the NHS referral or specialist centers as sadly most people are not privileged enough to afford the private sector!
LikeLike
Dear abp,
I do apologise for replying so tardily. It hasn’t been a good few months. I sadly don’t have any updates for NHS referrals. It is one of the awful things that we so often have to go privately to get any help, isn’t it. You might try Ehlers-Danlos Support UK? They have a helpline and support number 0800 907 8518. Take care, Claire
LikeLike
Hi Clare I have a degree in Physiology and another in Traditional Chinese medicine and have worked for over 30 years resolving difficult disorders for people lacking NHS resolution. I have worked with therapeutic light since 2003 and have been able to treat EDS sufferers with rapid demonstrable results. I have tried repeatedly to explain the biochemistry and the cases as a small investigation could show efficacy in eg 5 volunteers using approved therapeutic devices over eg 3 sessions. Do you know of anyone medical involved with EDS who would listen. I have tried UCH and both the UK and US EDS organisations. It wouldn’t be a panacea but has been life saving for one client, fairly inexpensive and I have shown that it can work on musculoskeletal, gut and repeated post operative tearing eg involving fistulas. I have no blood vessel evidence. Someone needs at least to listen as EDS people deserve to at least have this evaluated as it could be life altering for most of them. If I were unethical I would publicise this and cascade a feeding frenzy of cheap, possibly ineffective products marketed and without proper guidelines on use.
LikeLike
Dear Sue,
Please forgive my late reply to your kind comments. How kind of you to let me know about your therapeutic light work, and I can understand your eagerness to tell others when there is something helpful. Don’t we need it! Have you tried contacting Ehlers-Danlos Support UK? They are the main group helping us at the moment. I would love to be in touch and find out. Where to go from here?
Many thanks, Claire
LikeLike