The abbreviation for Ehlers-Danlos Syndrome, a connective tissue Disorder. There are 14 types of EDS that have been identified, the most common is Hypermobile EDS, abbreviated as hEDS. The button below will take you to the Ehlers-Danlos Society website listing and description of all 14 types.

The abbreviation of Hypermobile Spectrum Disorder. HSD is a different connective tissue disorder criteria than EDS. It is a primarily described as having joints that are unstable, but without the other issues that someone with any of the EDS types have. Unstable joints can cause widespread chronic pain and damage to joints.

Tissue that supports, protects, and gives structure to other tissues and organs in the body. Connective tissue also stores fat, helps move nutrients and other substances between tissues and organs, and helps repair damaged tissue. Connective tissue is made up of cells, fibers, and a gel-like substance. Types of connective tissue include bone, cartilage, fat, blood, and lymphatic tissue.

Medical students are told when they hear symptoms to look for the most common answer, “When you hear hoofbeats, don’t look for a zebra, look for a horse”, in other words expect to find something common, not something out of the ordinary. The problem is that it has been discovered the EDS is not rare, just rarely diagnosed.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, complex, neuroimmune disease that profoundly limits the health and productivity of patients and, like Long Covid, is often triggered by an infection. People with EDS are more prone to ME/CFS.

At this time, the cause of ME/CFS is not fully understood. There is no diagnostic test, cure, nor FDA-approved treatments or drugs for ME/CFS, and patients often suffer for life.

While many people recover from COVID-19, as many as half experience lingering symptoms six or more months after their initial infection. Long Covid is the patient-preferred term used to describe this experience of post-infection illness. Long Covid includes a broad range of symptoms that can be disabling, prevent recovery to pre-infection health, and thwart return to the workforce. People with EDS are more prone to suffer with Long COVID.

Patient advocates can help you navigate the healthcare system. Advocates ask questions, do research, write down information, and speak up for you. They help you get the care and resources you need.

A full-spectrum doula is a community care worker who offers support to people during the full spectrum of pregnancy – from preconception, to birth, to abortion, to miscarriage, to adoption, to postpartum. The work if very similar to a patient advocate

Midwives have expert knowledge and skill in caring for women throughout pregnancy, birth, and the postpartum period. The role of the midwife is to offer care that respects the goals and choices of their patient. There are many types of midwives, you can learn more of their history in America through the link below…

“The frequencies of incontinence complaints (59%), endometriosis (27%), dyspareunia (57%), and previous hysterectomy (44%) were higher than expected for a population with a mean age of 41 years. Incontinence could not be demonstrated objectively. Prolapse was diagnosed in 12 (29.3%).”

Cranial Cervical Instability, also known as CCI, is a medical condition that occurs when the ligaments and connective tissues that support the head and neck become weakened or damaged.

Postural orthostatic tachycardia syndrome (POTS) is a common autonomic nervous system disorder (dysautonomia) characterized by an excessively fast heart rate and symptoms of lightheadedness upon standing.

I am grateful that I had this GA support group early after my diagnosis so that I had a community that knew how hard navigating EDS is. Recently the founders of the Georgia Support Group were interviewed on the Bendy Bodies Podcast.

There are many different groups you can sign up for these virtual chats like Parents, Teens, Men, Partners, and LGBTQIA+. Some take place monthly, some quarterly.

The Ehlers-Danlos Society’s mission is to spread awareness and knowledge of types of EDS and HSD, educate medical professionals, and foster and fund research. The Helpline is available via both email and phone.

Support from other Zebras can be life changing when we have been struggling for understanding for so long.