Resources

Advocacy, Research & Information

Bendy Bodies with the Hypermobility MDBendy Bodies with the Hypermobility MD

Bendy Bodies with the Hypermobility MD Podcast with Dr. Linda Bluestein. Learn about EDS and treating it from a doctor who has it.

Hypermobility Happy Hour Hosted by Kerry, an attorney passionate about spreading awareness about hypermobility conditions including hypermobile Ehlers-Danlos Syndrome.

Project EDS ECHO A program for healthcare professionals across all disciplines who want to improve their ability to care for people with EDS, HSD and associated symptoms and conditions. CME/CPD credits available at no charge to participants.

The Ehlers-Danlos Society Patient support, scientific research, advocacy, and increasing awareness for the Ehlers-Danlos syndromes, hypermobility spectrum disorder, and related medical disorders.

Global Genes For individuals and families fighting rare and genetic diseases. 

Hypermobility Syndromes Association A UK based charity serving people who have Hypermobility Spectrum Disorder (HSD), joint hypermobility syndrome, Ehlers-Danlos syndrome (all sub-types), Marfan syndrome, Pseudoxanthoma Elasticum, Sticklers and Osteogenesis Imperfecta.

Spinal CSF Leak Foundation An online forum for education and support.

Lilian Holm Wellness Physical Therapy and Hypermobility Blog

Pain News Network is a non-profit, independent online news service that provides daily, in-depth coverage about chronic pain and pain management. 

Ehlers-Danlos Bloggers

The Only Certainty Is Bad Grammar A blog about chronic pain, beautiful makeup, and life, by Crystal Lindell.

Wetzel’s EDS Life John Wetzel’s information hub for discussion, research and all things Ehlers-Danlos Syndrome.

My Pain IQ A resource for chronic pain, by a pain management Physician Assistant Brianna Cardenas. See her excellent discussion of her own spinal cerebrospinal fluid (CSF) leak issues.

ABCD MCAS what? A blog by Arielle, a 22 year old with MCAS (Mast Cell Activation Syndrome), POTS (Postural Orthostatic Tachycardia Syndrome), Sjogren’s Syndrome, Osteoporosis, immune deficiencies and Ehlers-Danlos Syndrome — an immune system gone wild.

Hospital Princess After spending 8 months of one year in the hospital, Cheyanne decided to blog her life with Ehlers-Danlos Syndrome, Mast Cell Disease, intestinal failure, and all of the joys in between. 

Anxiety Zebra Just a woman trying to survive the hurdles chronic mental and physical illness have laid for her.

Ella Hollis Trying to find normality amongst multiple chronic illnesses.

Strength/Flexibility/Health/EDS Living well with Ehlers-Danlos, other hypermobility syndromes and related conditions.

Flying Through It A journal of staying fit and healthy despite being diagnosed with Ehlers-Danlos Syndrome.

The Wanderful Life Full-time camper living, hiking, sustainability, and handling the challenges of this wanderful life with Ehlers Danlos.

Highly Recommend

McGuff Pharmaceuticals The makers of Ascor.

Ascor Drug Facts The drug that gives me widespread symptom relief for hEDS.

LDN Science Everything low dose naltrexone, a powerfully healing drug.

Naltrexone (ReVia) Drug Facts On the advice of my endocrinologist, I tried higher doses of naltrexone and found them more effective than LDN.

BrainRX Neurofeedback Clinics Chronic pain and illness take a toll on the brain. This is the most effective neurofeedback I have had.

Joint Care

The Gokhale Method The very best system for proper posture and using joints without strain.

TRX Training Stabilizing, whole body exercise, healthy for spine.

Power Plate Vibration stimulates collagen repair.