RESOURCES
Below you will find links to resources that can help you, your doctors, family and friends to better understand HMS so that you can better treat it. I hope these resources will help you as much as they have helped me and will serve as a stepping-stone to a more healthy, pain-free, and fulfilling life. Enjoy!
Books
Joint Hypermobility Handbook - A Guide for the Issues and Management of Ehlers-Danlos Syndrome Hypermobility Type and the Joint Hypermobility Syndrome by Dr. Brad Tinkle
- This book gives a general overview of what Hypermobility Syndrome is and explains all of the various symptoms which can be associated with the disorder and how they are treated. The back of the book contains practical information for how to overcome many of the daily struggles, both emotional and physical, that are a result of HMS, covering topics such as coping, parenting, and self-management.
- Link: http://www.amazon.com/Hypermobility-Handbook--Management-Ehlers-Danlos-Syndrome/dp/098257715X/ref=sr_1_2?s=books&ie=UTF8&qid=1315592148&sr=1-2
A Guide to Living with Hypermobility Syndrome: Bending without Breaking by Isobel Knight
- This book is wonderful because it was written by an actual HMS patient, and is much more accessible for other patients to read. The book explains succinctly what HMS is, how it is diagnosed, and the various symptoms associated with it, and also has special sections on management, children and adolescents, and
Hypermobility Syndrome: Diagnosis and Management for Physiotherapists by Rosemary Keer and Rodney Grahame
- This is a more technical book written for doctors by doctors so it can be confusing to read as a patient, but it really explains what HMS is and how it works in depth. It also has really great guides for how to treat HMS with physical therapy, other exercise, and lifestyle changes. This is a great resource to share with your physical therapist, general practitioner, and any other specialists or health care professionals (massage therapist, therapeutic Pilates instructor, etc.) you might be seeing to help them understand your condition and how best to treat it.
Hypermobility, Fibromyalgia, and Chronic Pain by Alan Hakim, Rosemary Keer, and Rodney Grahame
- This book gives an in-depth look about how chronic pain operates and explores the connection between hypermobility syndrome and fibromyalgia. Filled with technical details it can be a hard read but is extremely informative and is great for passing along to any of your doctors.
The Fainting Phenomenon: Understanding Why People Faint and What to do About It by Dr. Blair Grubb
- This book explains the mechanics behind fainting, paying special attention to POTS, an autonomic disorder that frequently accompanies hypermobility syndrome, explaining the various causes and treatment options. This book is technical but is written to be accessible to patients and is extremely informative.
Articles
Ehlers Danlos Convention Handouts
- These handouts are summaries of the talks given by speakers at the Ehlers-Danlos National Conventions and are a great way to learn about what is going on in the HMS community, get updates on new research and treatment options, and
- 2010 Conference: http://www.ednf.org/index.php?option=com_content&task=view&id=1982&Itemid=88889194
Handouts We Recommend:
Clair Francomano - this handout gives a comprehensive look at pain management for EDS patients
Howard Levy - this handout gives a good overview of the different types of treatment options for a diverse number of HMS symptoms
Alan Pocinki - this handout gives an excellent overview of both the primary and secondary symptoms of HMS, perfect for sharing with both doctors and family members
- 2011 Conference: http://www.ednf.org/index.php?option=com_content&task=view&id=2052&Itemid=88889219
Handouts We Recommend:
Dr. Blair P Grubb “Postural Orthostatic Tachycardia Syndrome”
Sarah Gurley-Green "Patient does not mean passive: Taking control of your health care without illness controlling your life"
Dr. Sabrina M Neeley “Living with the EDS: Developing an effective self-management strategy to maximize your health and quality of life"
Kathleen Zonarich “Building a successful exercise program in the EDS population" - this handout serves as an excellent guide for how physical therapy should be approached with HMS patients and is perfect for sharing with your PT to make sure that they give you the right kind of care
Chilling Concept: Chronic Pain as a Brain Disease - http://www.ednf.org/index.php?option=com_content&task=view&id=1971&Itemid=88889064
Daily Pain Diary - https://www.caremark.com/Imagebank/Health_Diaries/DailyPainDiary.pdf
Ehlers-Danlos Syndrome, Hypermobility Type by Dr. Howard Levy - http://www.ncbi.nlm.nih.gov/books/NBK1279/
Other Websites and Blogs
Ehlers-Danlos National Foundation – www.ednf.org
The Hypermobility Syndrome Association – www.hypermobility.org
Pretty Ill – www.prettyill.com
Hypermobility Fundraising & Awareness Campaign - http://www.hypermobilitycampaign.blogspot.com/
My Life with Ehlers-Danlos Syndrome - http://danielledaviseds.blogspot.com/
But You Don’t Look Sick – www.butyoudontlooksick.com (this website, created by a Lupus patient, explorers what it means to live with an invisible illness, and offers the ‘spoon theory’ as a way of explaining to others what it feels like living with a chronic illness)
iTunes
- Just search the word ‘hypermobility’ in iTunes and it will bring you to a page where you can download two free podcasts about the disorder and will give you a link to download Dr. Tinkle’s iPad app called ‘JHS Diagnosis’ which explains how HMS is diagnosed. All of these downloads are great for sharing with family, friends, and healthcare professionals.
Medicine Grand Rounds, Arizona Health Sciences Center, True Collagen Disorders: Hypermobility Syndromes, a Blessing and a Curse by Dr. Eric P. Gall
Oxford University Press, Rheumatology Oxford Journals Podcast, Hypermobility in Children, February 2010
JHS Diagnosis, iPad app, ‘Utilities’ category
