Resources

Ehlers-Danlos Blogs

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.

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.


Advocacy & Research Organizations

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

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

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.