Patient Resources
Language is power!
Below are a collection of resources for EDS, hypermobility spectrum disorders, Autism, nutrition, lifestyle and many many more essential articles for advocating for your health care needs.
By Rachel Lee
Hypermobility Basics: A Cultural Approach to Long Term Health
While primarily addressing those on the hypermobility spectrum, of which Autism is frequently present, any patient with chronic illness can benefit from this wholistic approach to long term stability.
Handout: A Cultural Approach to Long-Term Health
Accompaniment to “Helping Ourselves.” Expanded Out line and Baby-Steps.
Cold-Turkey Low-histamine Diet and Starter Menu
Designed for EDS and patients with POTS, MCAS/MCAD, IBS and others who need a step up in managing inflammation naturally. Low histamine diets are used medically for histamine intolerance, mastocytosis, and autoimmune communities with patient reported benefits in inflammation control, reduction in pain and symptoms, and more efficiency in their necessary Rx’s. *
Developed by the Swiss Interest Group Histamine Intolerance, this is a comprehensive guide to histamine levels in common foods including spices and additives.
Dancing for Joy: Finding movement again in hypermobility spectrum disorders.
An essential introduction to fascia for all, including Ehlers-Danlos syndromes and other connective tissue disorders. Also includes a guide to finding a good physical therapist.
Handout: Facial Health Resource
A guide to beginning your journey to fascial health at-home, this accompaniment to Dancing for Joy is both for your benefit and for the benefit of your physiotherapists and physicians. While a patient with connective tissue complications may be more in need, these principles for health and movement are beneficial for ALL.
*Patients with vascular EDS, vascular complications in Classical or other EDS types, and patients with organ complications are strongly advised to consult their physicians prior to taking any supplements or making diet changes. We do NOT advocate this as a weight loss program.
General Resources
General Ehlers-Danlos and Hypermobility Spectrum information
What are Ehlers-Danlos Syndromes?
Resources for EDS and Pain Management from Dr. Pradeep Chopra
EDS, HSD and patient ad physician education articles by Dr. Alan Spanos
Diagnosis Instructions for Non-Specialists by Dr. Alan Spanos
General Information about Autism Spectrum
Attwood & Garnett Events – a global resource from two of the world’s leading experts and educators on Autism Spectrum Disorder. Their blogs and educational resources, paid and free, provide phenomenal insight into the minds, hearts, and souls of Autistic individuals. Highly recommended by Spectrumites.
Jennifer Cook O’Toole – Award winning author of books for adults and kids on the spectrum.
AspienGirl – Towards a Female Profile of Autism for Adults and Children
Hypermobilty Spectrum Disorders in Autism
The Relationship Between Autism and hypermobile Ehlers-Danlos Syndromes/Hypermobile Spectrum Disorders
Autism, Joint Hypermobility-Related Disorders and Pain from Frontiers in Psychiatry
Specialty Articles & Videos
The Beighton Score is Unreliable!
– Read more from Norris Labs and Dr. Courtney Gensemer
Varients in the Kallikrein Gene Family and hEDS
“This study provides the first genetic and biological evidence for the involvement of Kallikrein gene variants in hEDS. Through WES of two families, we identified the KLK15 p.G226D variant. Supporting this genetic discovery, in vivo data demonstrated that the KLK15 variant causes structural and functional effects across multiple organ systems in a murine model, consistent with an hEDS phenotype…The absence of damaging Kallikrein variants should not preclude patients from receiving a clinical diagnosis of hEDS.”
Chemical Intolerance and Mast Cell Activation: A Suspicious Synchronicity
“The new study by researchers at The University of Texas Health Science Center at San Antonio, as well as the Massachusetts Institute of Technology and the AIM Center for Personalized Medicine, supports mast cell activation syndrome and mediator release (MCAS) as an underlying mechanism for chemical intolerance.“
Disclaimer: The information contained on this site and the supporting attachments provided by Rachel Lee Patient Advocacy Consulting are for educational purposes only. Although we have performed extensive research regarding medical conditions, treatments, diagnoses, protocols and medical research, the staff of Rachel Lee Patient Advocacy Consulting are not licensed members of the North Carolina Medical Board or any clinical affiliates including but not limited to the NC Board of Physical Therapy Examiners, the NC board of Licensed Professional Counselors, or the NC board of Dietetics/Nutrition. Information provided by members of Rachel Lee Patient Advocacy Consulting should not be considered a substitute for the advice of a licensed medical doctor, counselor, therapist or other licensed clinical practitioner in handling your medical affairs.