Resources
Contents:
Section 1 - Books and other printable materials
Section 2 - Charities and not for profits
Section 3 - Important web pages
Section 4 - Webinars and Live Streaming
Section 5 - List of health care professionals and wellness practitioners
Important note:
Redcliff-House is a small business set up to raise awareness of hypermobility spectrum disorder, hypermobile Ehlers-Danlos syndrome and associated disorders. Run on a part-time basis, and with hypermobility related disorders ourselves, our aim is to try and fill gaps in information provision, designing awareness raising materials and publishing literature which will benefit patients and healthcare professionals and save charities and organisations duplication of time and resources, whilst raising money for charity at the same time.
We assume no responsibility or liability for the content of websites linked on our site. Such links should not be interpreted as endorsement by us of those linked websites. We will not be liable for any loss or damage that may arise from your use of them.
If you have a special interest in hypermobility related disorders; offer a service to those affected by these conditions, and would like to have your details included on this list, please write to us at editor@redcliffhousepublictions.com.
Section 1 - Books (listed in alphabetical order):
A Multi-Disciplinary Approach to Managing Ehlers-Danlos (Type III) – Hypermobility Syndrome
by Isobel Knight 2013
Bending without Breaking - Living with Ehlers-Danlos Syndrome Hypermobility Type
by Isobel Knight, (2nd Edition) Revised 2015
‘Hypermobile Ehlers-Danlos Syndrome during pregnancy, birth and beyond’
by Pearce G. Reinhold E. and Prezaro
Downloadable PDF (which has had more than 10,000 downloads by midwifery and medical professionals) can be found here:
Hypermobility and Hypermobility Syndrome -
A letter to my patients by Dr Alan Pocinki MD
Hypermobility, Fibromyalgia and Chronic Pain, 1e
by Hakim, Keer and Grahame, 2010
Published by Churchill Livingstone
Hypermobility Syndrome: Diagnosis and Management for Physiotherapists
by Rosemary J. Keer & Rodney Grahame.
Published by Butterworth Heinemann
Hypermobility Without Tears
by Jeannie Di Bon
Published independently
Joint Hypermobility Handbook 2010 (2nd edition)
by Dr. Brad Tinkle
Magnesium and EDS Parts 1 & 2
by Dr Heidi Collins
Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity
by Afrin, L. MD 2016
Our Stories of Strength: Living With Ehlers-Danlos Syndrome
by Reutlinger, Myles, Francomano et al,
Pilates Without Tears: The 5-step no pain, no strain strategy to move and feel great
by Jeannie Di Bon, 2016
Stickman Communications
by Hannah Ensor
A light hearted view aimed at predominately at children. Titles include:
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You know you have Hypermobility syndrome / Ehlers-Danlos syndrome when...
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You know you have Postural Orthostatic Tachycardia syndrome When...
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You know you have been in hospital too much when...
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You know you have been pushing it when...
Understanding hypermobile Ehlers-Danlos syndrome, and hypermobility spectrum disorder - previously known as Ehlers-Danlos syndrome hypermobility type, and joint hypermobility syndrome
by Claire Smith 2017
(Feedback from medical professionals, about this book can be found here).
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Section 2 - Charities and Not For Profits (listed in alphabetical order):
Ehlers-Danlos Society
Visit: www.ehlers-danlos.com
A global community of patients, caregivers, health care professionals, and supporters. 'Research is at the centre of what we do, so that one day we will have a cure.' The Society support collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS and HSD population.
A wide range of printable materials including educational leaflets and posters.
Ehlers Danlos Support UK
Visit: www.ehlers-danlos.org
A wide range of printable information covering Ehlers-Danlos syndrome
Publications include the following:
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Pregnancy & Childbirth in Ehlers-Danlos Syndrome
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Difficulties in School/College for Young People with EDS
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Learning to be Different (written for 4-7 year olds)
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EDS Medical Passport
EDS Wellness
Visit: edswellness.org
A nonprofit organisation providing virtual and in-person patient and continuing medical education, to facilite proper diagnosis for ALL hypermobility disorders and related conditions, and to develop and implement research-based solutions for patients and healthcare providers.
Sussex EDS
Visit: https://www.sussexeds.com
A Sussex wide voluntary community group actively supporting people with EDS/HSD.
The Hypermobility Syndromes Association
Visit: www.hypermobility.org
A wide range of printable information covering Ehlers-Danlos syndrome, joint hypermobility syndrome, Marfan syndrome, Osteogenesis imperfecta and Stickler syndrome is available from the Hypermobility Syndromes Association website.
A range of purchasable publications are available from their online shop (visit: www.hypermobilityshop.org)
Their range of publications includes:
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Living well with a heritable disorder of connective tissue
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An Educator’s Guide to the hypermobile student
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Have you, or someone you know, been diagnosed with one of the hypermobility syndromes
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Persistent fatigue and heritable disorders of connective tissue.
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Section 3 - Important web pages to visit (listed in alphabetical order):
EDS and Related Disorders Global Registry
To join the 'Ehlers-Danlos Society EDS and Related Disorders Global Registry', and help researchers throughout the world to advance understanding of EDS, HSD, and related symptoms and conditions click here: https://www.ehlers-danlos.com/eds-global-registry/
General Practitioner (GP) Toolkit
The Royal College of General Practitioners Ehlers-Danlos syndromes (EDS) toolkit, created in partnership with EDS UK, hopes to begin a revolution in the recognition of inherited connective tissue disorders. This practical online guide describes the diagnostic clues which can enable GPs to recognise EDS as well as common comorbidities such as autonomic dysfunction, gastrointestinal dysfunction, mast cell active syndrome etc., The toolkit offers a comprehensive guide to approaching the management of people who have EDS in a primary care setting, as well as indications for onward referral.
Professionals Hypermobility Network (The Kent Model)
The Professionals Hypermobility Network (Kent Model), created in partnership with the Hypermobility Syndromes Association, educates health care professionals (via Masterclasses and online resources) and links hypermobility informed and friendly professionals and volunteers.
http://hypermobility.org/professionals-hypermobility-network/
Inspire - EDS and related disorders online support community
https://www.inspire.com/groups/ehlers-danlos-syndromes-and-related-disorders/
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Section 4 - Webinars and Live Streaming
Webinars from Chronic Pain Partners
https://www.chronicpainpartners.com/webinars/
Webinars from Ehlers-Danlos Society
https://www.ehlers-danlos.com/webinars/
Live Streaming HypnOT (with expert Patients Jo Southall (Jo Southall Ocupational Therapy and Kim Claydon (Positive Solution Hypnotherapy)
https://www.facebook.com/events/433177527251501/?event_time_id=433177533918167
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Section 5 - Health care professionals and wellness practitioners (listed in alphabetical order):
We have compiled a list of health care professionals and wellness practitioners with an interest in, and who are supportive of, hEDS; HEDS, and PoTS. If you would like to have your name included (or removed) please write to us at editor@redliffhousepublications.com. Please note that Redcliff-House does not have any financial interest in any of the professionals, clinics or wellness practitioners listed and there are no formal listing criteria, and no warranties, guarantees (express or implied) are made as to the quality of care given or medical advice provided by those in this listing. In some cases a referral may be required before an appointment can be made. This list will be added to regularly, but is far from exhaustive. Additional links to lists available through other websites can be found at the end of this section.
Allergy/Immunology (listed in alphabetical order)
Professor Suranjith Seneviratne DPhil(Oxon), MBBS, MD, MRCP, DPath, MRCPath, FRCP, FRCPath, FCCP
Clinical Immunology, Allergy, Immunogenetics
Clinics in London UK and Colombo Sri Lanka
https://www.nuffieldhealth.com/consultants/professor-suranjith-seneviratne
Alexander technique (listed in alphabetical order):
Julie Barber
Alexander Technique Teacher
Folkestone, Kent, UK
Ann Rodiger
Balance Dance Studio
New York, USA
arodiger@balanceartscenter.com
Laura Tuthall
New York USA
Breathworks - diaphragmitic breathing to ease chronic pain (listed in alphabetical order)
Elin Morgan
Breathworks Teacher
Birmingham/Worcester/West Midlands (UK)
Chiropractors (listed in alphabetical order)
Sari Botros
Rock Chiropractic Health Centre
Exeter (UK)
Elisabeth Davidson
Chiropractor
Aberdeenshire (UK)
Lee Harvey
Weston Chiropractic Clinic (UK)
Marc Martineau
Exmouth Chiropractic Clinic
Exmouth (UK)
www.exechiro.co.uk/meetthechiropractors
Consultants and Consultant Surgeons (listed in alphabetical order):
Dr Dianne Bruce
Consultant Cardiologist
BMI The Harbour Hospital
Bournemouth, UK
www.bmihealthcare.co.uk/consultants/diane-bruce
Jonathan Eldridge - Consultant Knee Surgeon
Spire Hospital, Bristol
https://www.spirehealthcare.com/consultant-profiles/mr-jonathan-eldridge-c3334258/
Dr Chris Morley
Consultant Cardiologist - Syncope, PoTS (including patient with HSD/hEDS) From aged 16
Yorkshire, UK
https://www.theyorkshireclinic.co.uk/specialists/cardiology/dr-chris-morley
Mr Ian Nelson
Specialty: Trauma & Orthopaedics
Clinical interest: Spine surgery (inc., scoliosis)
Bristol, UK
https://www.nbt.nhs.uk/our-services/a-z-consultants/mr-ian-nelson
Mr John Seaton
Consultant Gynaecologist -
Menstrual disorders (menorrhagia); Urodynamics; Urogynaecology; Prolapse surgery; Colposcopy (examination of cervix and vagina)
Spire Hospital
Hythe, UK
https://finder.bupa.co.uk/Consultant/view/31516/mr_john_seaton
Dr Graham Stuart
Cardiologist (Special interest in Marfan syndrome and EDS)
Spire Hospital Bristol , UK
Email: sportscardiology@blueyonder.co.uk
https://www.spirehealthcare.com/consultant-profiles/dr-graham-stuart-c2596642/
Please note: Consultant Rheumatologists are listed under Rheumatology (please scroll down
Dentistry (listed in alphabetical order):
The Dental Barn - Based in East Sussex (UK), the team at the Dental Barn say: 'The best way that EDS patients are treated is with understanding, empathy and good communication with patients, families and dental professionals. If you would like a free coffee and a chat to talk about how we can help you with your EDS and dental treatment just call us on 01323 325397.'
https://thedentalbarn.co.uk/ehlers-danlos-syndrome-east-sussex/
JNT Dental - Based in Richmond Virginia (USA), the team at JNT Dental say: 'We have a large patient base that have hypermobility disorders'. From craniofacial pain, temporomandibular joint disorders (TMD) and sleep apnea management to top-notch dental care, our team at JNT Dental provides you with access to some of the most cutting-edge diagnostic tools and treatment options available today.
https://www.jntdental.com/2018/09/10/hypermobility/
Mitakides - Based in Dayton, Ohio, the practice say 'Dr. Mitakides is dedicated to complete care for his patients, including treatment of craniofacial pain and TMJ disorder in the Ehlers-Danlos Syndrome (EDS) patient. He is on the international board of The American Academy of Craniofacial Pain, and serves on the Medical Board of the international Ehlers-Danlos Society.'
Dermatology (listed in alphabetical order):
Dr Nigel Burrows MD FRCP
Dermatology
Addenbrooke’s Hospital
nigel.burrows@addenbrookes.nhs.uk
Gastroenterology (listed in alphabetical order):
Professor Qasim Aziz
Professor of Neurogastroenterology
Gastrointestinal symptoms associated with HSD/EDS and PoTS (From age 16)
Clinics at The Royal London Hospital London and St Bartholomew's Hospital London
https://thephysiciansclinic.co.uk/physicians/professor-qasim-aziz/
Hypnotherapy (listed in alphabetical order):
Kim Claydon Hypnotherapist (and hEDS/HSD Expert Patient)
Positive Solution Hypnotherapy
Hypnotherapy to help you cope better with hEDS/HSD related pain and even reduce it.
kim@positivesolutionhypnotherapy.com
Massage Therapy (listed in alphabetical order):
Bristol Massage Therapy - Victoria Armstrong says: 'Like much of my continuous professional development, my introduction to this complex world of hypermobile conditions [and the benefits that massage therapy can provide to people suffering with a hypermobility syndrome] was through a client. A lady in her mid-20s, she has had symptomatic hypermobility syndrome all her life, and has become an expert on her symptoms...' 'Working with this client, I have learnt a lot about hypermobility syndrome and am incredibly grateful for her encouragement, guidance and patience whilst I have been growing as a practitioner.' '...it turns out I don’t just have one client with some form of hypermobility, I have several.
https://www.bristolmassagetherapy.co.uk/tips-articles/massage-and-hypermobility
Occupational therapy (listed in alphabetical order):
Abi Johnson
Occupational Therapist,
Brentwood, Essex
Particular interests in coordination, handwriting and anxiety.
Email; abi@occupationaltherapyessex.co.uk
Website; www.occupationaltherapyessex.co.uk
Jo Southall Occupational Therapist and EDS Expert Patient.
Jo offers a range of services via video chat so you can reach her, as an OT, without the hassle of leaving your home - just 30 minute sessions via Skype or Google Hangouts. Discuss self-management strategies, devise flare-up plans and more. Jo offers a range of services to suit most budgets. Specialist areas are managing long-term conditions, rare disease advocacy, accessibility, travel, outdoors and creative activities.
Individual appointments start at just £20 per 30 minutes and include the following:
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Freestyle Appointments - Not sure what you need? Come to me with a specific issue or two and we’ll work to find solutions. Perfect for vague feelings of I’m-sure-it-shouldn’t-be-this-hard. Leave the details to me.
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Personal Shopping for Daily Living Aids - Aids and adaptations are available for a huge range of activities but the variety available can be overwhelming. Come to me with a list of your challenges and I will assess you and give you an itemised list of recommendations to suit your budget.
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Corporate Consultation
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Flare Up Planning
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Joint Protection Masterclasses
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Pacing Masterclasses
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Personal Shopping for Daily Living Aids
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Sleep Hygiene eClinic
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Wellbeing in Practice mentoring
All of Jo's services are available worldwide excluding The USA & Canada.
jboccupationaltherapy.co.uk/ot-services/
Orthotics (listed in alphabetical order)
DM Orthotics (offer made to measure dynamic movement orthoses for those with EDS/HSD)
www.dmorthotics.com/case-studies
Osteopathy (listed in alphabetical order)
Abi Shrapnell, BSc
Osteopathic Medicine Osteopathy in connective tissue disorders, osteopathy in autonomic dysfunction
Newbury and Wokingham clinics
Essential Osteopathy
Osteopaths
Glasgow, UK
https://www.essentialosteopathy.co.uk/blog/hypermobility-and-osteopathy/
Belinda Eyes
Chew Vally Osteopathic and Therapies Practice
http://www.chewvalleytherapies.co.uk/2015/08/hyper-mobility-and-hyper-mobility.html
01275 333587
Zac Laraman
Sports Osteopath
Gaerwen (North Wales)
http://www.zaclaraman.com/zac-laraman/
Plympton Osteopathic Centre
Plymouth
Pain specialists (listed in alphabetical order)
Richmond Stace
Specialist Pain Physiotherapist & Pain Coach
London and Surrey, UK
www.specialistpainphysio.com/joint-hypermobility/
Marie Wilson
Physiotherapist
Complex Pain Management Therapy, Australia
Chronic and Complex Pain
https://complexpainmanagement.com.au
Linda Bluestein MD
Wisconsin Integrative Pain Specialists, USA
www.wisconsinintegrativepainspecialists.org
Parenting (listed in alphabetical order):
The Wheels on Mum
Danielle Broad - EDS Expert Patient; parent; wheelchair user, journal content contributor and blogger
shares her parenting tips - 'Making the parenting world work for us with a newborn, despite disability'.
Read: Parenting from my wheelchair.
Mothering Matters - assists women with EDS transitioning from work life to motherhood)
Rachel Fitz-Desorgher
Midwife, infant feeding consultant, active birth teacher and parenting consultant.
Berkshire (UK)
Physiotherapy (listed in alphabetical order):
Alison Bartup Physiotherapy
Stockport, UK
0161 440 8970
Louise Cousins
Ash Physiotherapy and Sports Clinic Canterbury, Kent
Canterbury, UK
www.ashphysiotherapy.co.uk/about-us/our-physiotherapists/louise-cousins/
Friel (Lorraine) Physiotherapy
Glasgow, UK
www.facebook.com/frielphysiotherapy/
Private appointments at: thefootandlegclinic.co.uk
Nicole Gipps
SV S[prts Therapy
Clinics in Loughton and Harlow (UK)
Robyn Hickmott
Phypsiotherapist
Applecross Physiotherapy, Australia
(clinical interest and expertise in hypermobility syndromes in children and adolescents)
www.applecrossphysiotherapy.com.au/robyn-hickmott
Gavin Kelly
Orthopaedic Physiotherapy
Cowen House
North Somerset, UK
www.resolvehealthphysio.co.uk/about-us/gavin-kelly/
Andre Le Leu
Dr Patrick Kiely
Rheumatologist
St Georges Hospital, UK
https://www.stgeorges.nhs.uk/people/dr-patrick-kiely/
Bsc(Physiology),BPHTY(Physiotherapy), BESS, EUSSER
Complex pain, Orthopedic Rehabilitation, Complex Instability (Upper Limb)
Clinics in London and St Albans
Catherine Nutt
Physiotherapist - Sports medicine, musculoskeletal outpatients
Central Health
The Royal Hospital, UK
Jason Parry
Physiotherapist (hypermobility and complex regional pain syndrome)
www.central-health.com/ourpeople/jason-parry/
Physiocure®
Chartered Physiotherapists and business partners, Louise Grant and Anna Higo (née Nelson) own Physiocure®, which operates out of Cookridge Hall Health & Fitness in Leeds, UK. Anna and Louise attend Hypermobility and Ehlers-Danlos courses to update their knowledge on these conditions as they see a fair number of patients with these hEDS and HSD. In addition, Karen, their pilates instructor has been on a specialist APPI course on how to help hypermobile individuals with pilates exercises. The information gathered has been desalinated to the rest of the Physiocure Team, via in-service training, in order to the to share this knowledge. Anna's written summary article can be found by clicking here.
Jane Simmonds, DProf, MA, PGDip, BAppSc, BPE, MCSP, MACP, SFHEA Physiotherapy, Hypermobility, EDS, sports and performing arts injuries, chronic fatigue, pain
Platinum Medical Centre
Wellington Hospital, UK
www.central-health.com/services/hypermobility/index.html
Richmond Stace
Specialist Pain Physiotherapist & Pain Coach
London and Surrey, UK
www.specialistpainphysio.com/joint-hypermobility/
Dawn Thundow
Body Sym
Ramsgate, UK
www.bodysymphysio.co.uk/dawn-thundow-physiotherapist/
Wendy Wagner
Wendy 4 Therapy
Licensed Physical Therapist
Naperville IL (USA)
Marie Wilson
Physiotherapist
Chronic and Complex Pain Management, Australia
complexpainmanagement.com.au
Pilates (listed in alphabetical order):
Jeannie Di Bon Movement Therapy
Based in London (UK), Jeannie Di Bon offers specialist courses for hypermobility and low back pain plus Integral Movement Method classes for all abilities. Sessions are available in Wimbledon, SW London and Central London.
Through her own personal experiences of living with EDS, in addition to working closely with clients with hypermobility and EDS, Jeannie has created an online course to help patients develop a strong, stable body in a healthy, safe way.
Jeannie's blog (including articles such as ' EDS and exercise - not the opposites you'd think'') can be found here.
Jeannies's talk 'Strengthening your hypermobile core with Pilates', presented at the Ehlers-Danlos Symposium in Ghent (2018), can be found by clicking here
Suzanne Martin
Pilates Instructor Trainer
Scoliosis, The Foot, Hypermobility, Assymetry
Lameda, California, USA
Podiatry (listed in alphabetical order):
Dawn Shailer BScPod, MaDipSW
Podiatrist
Hypermobility Syndromes, Aspergers, autism, epilepsy, Cerebral Palsy
Clinic in Eastboune, UK
The London Podiatry Centre UK
Advanced dedicated podiatric gait analysis facilities
www.londonpodiatry.com/podiatry/gait-analysis/
Prolotherapy (listed in alphabetical order)
Caring Medical (USA)
Clinics in Illinois and Florida
www.caringmedical.com/prolotherapy-news/prolotherapy-ehlers-danlos-syndrome/
Gloria Tucker, MD
Prolothera/Regnerative Therapy (HEDS/EDS)
California, USA
gloriatuckermd.com/
Ring Spints (listed in alphabetical order):
Ring splints by Zomile - create very affordable, contemporary, solid silver ring splints for those in need of finger and thumb stabilisation
Rheumatologists
Philip Bull
Consultant Rheumatologist
One Healthcare
Kent, UK
www.onehealthcare.co.uk/consultants/dr-philip-william-bull/
Prof. Rodney Grahame and Prof. Ian Chikanza
The International Arthritis & Hypermobility Centre (IAHC) - Adults
The Harley Street Clinic
16 Devonshire Street,
London W1G 7AF.
www.iahcentre.com or contact The Practice Manager at info@iahcentre.com or by telephone on +44(0)7444 101 381.
Prof. Rodney Grahame and Prof. Ian Chikanza
The International Arthritis & Hypermobility Centre (IAHC) - Children
The Harley Street Clinic
84 Harley Street,
London W1G 7HW.
www.iahcentre.com or contact The Practice Manager at info@iahcentre.com or by telephone on +44(0)7444 101 381.
Alan Hakim MA FRCP (currently on 12 months sabbatical)
Rheumatology, General Medicine
The London Hypermobility Unit, UK
http://www.thelondonhypermobilityunit.co.uk
Dr Hana Kazkaz
The Hypermobility Clinic, Department of Rheumatology
University College London, UK
www.uclh.nhs.uk/OurServices/Consultants/Pages/DrHanadiKazkaz.aspx
Dr Patrick Kiely
Rheumatologist
St Georges Hospital, UK
www.stgeorges.nhs.uk/people/dr-patrick-kiely/
Dr Peter Lanyon
Rheumatlogist Nottingham, UK
finder.bupa.co.uk/Consultant/view/26106/dr_peter_lanyon
Dr Gayatri Mittal MD, PhD, MRCP
Rheumatology
Clinics at Stanmore Hospital, Wellington Hospital, The London Clinic, UK
www.thewellingtonhospital.com/
Sleep Clinics (listed in alphabetical order):
The Sleep Service (appointments by medical practitioner referral or 'Choose and Book' only)
Sleep apnoea, restless leg syndrome, snoring etc.,
Liverpool (UK)
https://www.aintreehospital.nhs.uk/our-services/a-z-of-services/sleep-and-ventilation/sleep-service/
Upright MRI Centre
Medserena Upright MRI Centre
London, UK
Further lists of HSD/hEDS friendly health care professionals can be found from the sites below (listed in alphabetical order):
A list of health care professionals around the globe is available from the Ehlers Danlos Society:
https://www.ehlers-danlos.com/medical-professionals-directory/
A list of PoTS friendly health care professionals is available from PoTS UK:
A list hypermobility friendly health care professionals is available from the Hypermobility Syndromes Association:
http://hypermobility.org/help-advice/hms-clinics/
Blogs (listed in alphabetical order):
Jeannie Di Bon
Jeannie Di Bon Movement Therapy
https://jeanniedibon.com/blog/
Hannah Ensor
Stickman Communications
https://stickmancommunications.blogspot.com
Jo Southall
JB Occupational Therapy (JBOT)
https://jboccupationaltherapy.co.uk/blog/
Lucy Watts MBE
Lucy's Light
https://www.lucy-watts.co.uk/my-blog/
Claire Smith
Understanding hEDS and HSD