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. *

The SIGHI Histamine Food List

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?

EDS, HSD and patient and physician education articles by Dr. Alan Spanos

Diagnosis Instructions for Non-Specialists by Dr. Alan Spanos

Disjointed, ed. Diana Jovin. A remarkable guide to diagnosis and care of hEDS/HSD with over a dozen expert contributors. Ebook and hard copy available. 

Hypermobile Ehlers-Danlos Syndrome: Complex phenotypes, challenging diagnoses and poorly understood causes

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.

The Art of Autism

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

Summary at Autism.org

Academic, Genetic Study

Autism, Joint Hypermobility-Related Disorders and Pain from Frontiers in Psychiatry

 

 

Specialty Articles & Videos

The Latest Research

The Serotonin Theory of Depression: a systematic umbrella review of the evidence, by Molecular Psychiatry 2022

“The main areas of serotonin research provide no consistent evidence of there being an association between serotonin and depression, and no support for the hypothesis that depression is caused by lowered serotonin activity or concentrations.”

Read Here.

Coming Soon! 

Swollowing and Voice in EDS Syndromes

Vision Dysfunctions In EDS and Autism

Procedures and Perioperative Care Support

Fascial Health

” I’m excited about these! It feels like my own personal “missing link” to aspects of post-tethered cord release healing I never found. Thank you so much!”

Belea Bower – EDS Patient

#advocacyawareness

“It’s so heartening to see EDS patients, advocates and allies connect, especially when it’s led by an EDS-er.”

– Noelle H. EDS Patient

Hope and Empathy

“Rachel is a highly intelligent and perceptive listener who also has great empathy. I highly recommend her as a patient advocate. Her ability to listen and to empathise set up a great space for me to feel valued and heard.
I really enjoy working with her it feels like a team effort where we worked together to both set and achieve my desired goals.” – Tony Crowe

Advocacy Matters

“Rachel has been so helpful in finding proper medical care, gathering necessary info, prepping for appointments, all around supportive in every way. I highly recommend her!!” – Katie

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.