We as a support group can supply you with the following publications on Ehlers-Danlos Syndrome. We ask that you print off the order form at the bottom of the page and send it completed to:

Ehlers-Danlos Support Group
P.O. Box 337,
Aldershot,
GU12 6WZ

Please note that due to varying postal costs. There are three order forms. One for the UK, one for Europe and one for the rest of the world. Please use the appropriate order form for your location.
N.B. The order forms are in pdf format and therefore you will need Adobe Acrobat Reader installed to view.Click here to get this software from Adobe if you do not already have it.

Ehlers-Danlos Syndrome - 2nd Edition

This basic guide is a 30-page illustrated booklet on Ehlers-Danlos Syndrome (EDS). It has 20 different sections, which cover various aspects of EDS. The sections cover an introduction to EDS, explain what exactly collagen is, the different types of collagen and the abnormality in EDS as well as how EDS is diagnosed. The different Types of EDS are stated and the hereditary patterns for each one. Other sections include: Skin Features; Rheumatological Symptoms; Orthopaedic Complications; Vascular Complications; Gastrointestinal Complications; EDS and the Eye; Hearing Impairment; Pregnancy; The Urinary Tract; Complications of EDS in Childhood; Dental Aspects; Is there a Cure? Treatment; Surgery in EDS; and Anaesthesia.

ISBN 0 9525986 7 1

Price including p&p: - UK £2.00, Europe £2.50, Rest of World £4.00 airmail

Diagnosing Ehlers-Danlos Syndrome (Revised Nosology Villefranche 1997)

This is an illustrated booklet on diagnosing Ehlers-Danlos Syndrome (EDS) for members of the medical profession, revised types and diagnostic tests. Authors: Prof P Beighton, Prof B Steinmann, Prof P Tsipouras, Dr A De Paepe, Dr R J Wenstrup et al .

Free to UK Members. p&p: - Europe £1.00, Rest of World £3.00 airmail

The Management of Ehlers-Danlos Syndrome

This 200-page book is a compilation of 50 chapters written by specialists about their own areas of expertise and has been edited by Professor H A Bird MD FRCP and Valerie Burrows, it consists of a table of revised Ehlers-Danlos Syndrome Types (Villefranche 1997), and four sections: -

SECTION I - Complications of EDS

A Brief History of EDS; Rheumatological Features of EDS; The Skin in EDS; The Heart in EDS; The Lungs in EDS; Gastroenterological Features of EDS; Neurological Features of EDS; Gynaecological Aspects of EDS; EDS and the Urinary Tract; EDS and Osteoporosis; Spinal Deformity and EDS; Articular Manifestations of EDS; The Eye in EDS; EDS Vascular Type.

SECTION II - Practical Aspects of Management

Management of the Skin in EDS; Varicose Veins in EDS; Constipation in EDS; Surgery in EDS; Surgical Scars in EDS; Skin Surgery in EDS; Dental Treatment for Patients with EDS; Temperomandibular Joint Management in EDS; Orthodontic Treatment in EDS; Joint Hypermobility; Physiotherapy for EDS; Osteopathy and Pain Control; Relaxation as a Tool for Pain Management; Splinting and Bracing; Ways and Means of Coping with Daily Activities; Self-help for Speech, Language and Swallowing Issues in EDS; Hearing Impairment in EDS; Foot Care in EDS; Orthopaedic Management of Articular Problems; Steps to Chronic Pain Management; Pain Control in EDS; Basic First Aid for EDS; General Health; Daily Dental Care in EDS.

SECTION III - Genetic and Paediatric Aspects

Genetic Counselling; Visiting a Geneticist for a Diagnosis; Your Child and EDS; Hospital and Your Child; Your Child and Special Education Needs.

SECTION IV - Miscellaneous

Preparing a Medical History; Consulting Your Doctor; Appraising Treatment for Joint Problems; General Advice Offered to the Support Group by its Members; Coming to Terms With Diagnosis; Coping with Diagnosis - a Parent's View; A Partner and Parent's Perspective.

ISBN 0 9525986 5 5

Price including p&p: - UK £5.00, Europe £6.50, Rest of World £11.50 airmail

Pregnancy and Childbirth in Ehlers-Danlos Syndrome

This 32-page A5 booklet will be of immense value for medical and caring professionals as well as people with EDS. The main chapters are: - Introduction; Human Aspects of Pregnancy in EDS; Medical Aspects of Pregnancy in EDS; Physiological and Pathophysiological Changes in Pregnancy; Delivery in EDS; Post Partum Period; The Foetus and Newborn Child; and Conclusion. The subheadings cover a wide variety of subjects in an endeavour to answer all the queries likely to arise in a family thinking about pregnancy.

ISBN 0 9525986 0 4

Price including p&p: - UK £2.00, Europe £2.50, Rest of World £4.00 airmail

Ehlers-Danlos Syndrome - A Guide for Teachers

The 'Guide for Teachers' booklet gives a valuable insight into EDS for teachers who have pupils with EDS, as well as giving suggestions for coping with day-to-day management and medical emergencies. It is suitable for use by Youth Leaders and others working with children and gives appropriate advice whether for tots or teens.

ISBN 0 9525986 1 2

Price including p&p: - UK £1.50, Europe £2.00, Rest of World £3.50 airmail

Difficulties in School/College for Young People with EDS

The results of a survey conducted by a retired Head teacher and the members of the Ehlers-Danlos Support Group with recommendations made by a Physiotherapist, Occupational Therapist and the Head teacher.

Price including p&p: - UK £1.50, Europe £2.00, Rest of World £3.50 airmail

Learning to be Different

This is a booklet especially written, by one of our members, for young children ages 4-7 years old. It is a combination of a storybook and a colouring book and tells the story of a little girl with EDS who is starting school. In the story, on one visit to the hospital, she meets Michael who also has EDS and enjoys talking to him about their various symptoms.

ISBN 0 9525986 3 9

Price including p&p: - UK £1.50, Europe £2.00, Rest of World £3.50 airmail

'So, you have EDS too?'

An illustrated booklet written specifically for children, aged 8-13 years old, who have Ehlers-Danlos Syndrome. Topics include: So, what is EDS? How did I get EDS? What are the doctors looking for? Will I get better? What happens if I need to go into hospital? What do I tell my friends? Why don't any of my friends have EDS?

Price including p&p: - UK £1.50, Europe £2.00, Rest of World £3.50 airmail

Ehlers-Danlos Syndrome - Video

A 30-minute VHS video on Ehlers-Danlos Syndrome introduced by Professor P Beighton MD PhD FRCP DCH with Professor H A Bird MD FRCP covering the medical problems relating to the syndrome. The management of EDS is discussed with advice given by Physiotherapists and an Occupational Therapist. The video gives an insight into ways of providing help for a child when at school and at play etc. Some adults, with different types of EDS, share how it affects their day-to-day living, while a partner and parent talk about EDS from his perspective. UK format only.

Price including p&p: - UK £12.00, Europe £14.00, Rest of World £20.00 airmail.
In case of financial hardship, please send a minimum donation of £7.50 ( UK only)

Key-facts Medical Card

A small plastic card which gives details of Ehlers-Danlos Syndrome on one side and, on the other, advice to health professionals attending the bearer of the card. One card is suitable for Vascular Type (Type IV) and another for all other types. There is room for an emergency telephone number on both cards. General cards, as above, are available in Italian (I), French (F), Dutch (D), German (G), Swedish (S), Norwegian (N), Russian (R), Turkish (T), Danish (DA), Spanish (SP), Portuguese (P), Greek (GR), Polish (PO), Chinese (C), Finnish (FI). Please state letter code if ordering a foreign card.

(The information on this card is only general and should not in any way replace the individualised medical recommendations of the patient's own specialists. Always use the foreign card in conjunction with the English card, as we cannot guarantee the exact accuracy of the translation.)

Price including p&p: - UK £1.50, Europe £2.00, Rest of World £3.50 airmail

Order Forms

Please choose the relevent form for you location to order any of the above and much more.