*There are no two zebra alike! Likewise, there are no two persons with EDS who exhibit the exact same physical characteristics and problems.
What are Ehlers-Danlos Syndromes?
Ehlers-Danlos Syndromes (EDS) are a group of connective tissue gene disorders that produce complex problems across multiple systems of the body. There are no cures.
Connective tissue disorders disrupt the most fundamental processes and structures of the body, so resulting problems can be widespread, in a wide range of severity, and affect areas that might seem to be otherwise unrelated.
There are types of EDS and each type has certain physical traits and with notable exception in the most common form, the hypermobile type of EDS, most types have a known disease-causing gene. The physical characteristics that are common to all types of EDS include hypermobile joints (joints that move in greater amounts than expected) and skin involvement (soft, stretchy, saggy, too thin, easy bruising, easy wounding, poor wound healing, or atrophic acarring). EDS are known to affect more than one in 2,500 men and women, of every race and ethnicity.
To know more about the various types of EDS please see the website link to the right.
EDS have varied presentations and in some types can be life-threatening. EDS are multi-systemic disorders. Symptoms can be treated as they arise. Care is largely preventative, to support and manage EDS with the intent of keeping damage as minimal a possible. Specifics have to be tailored to those symptoms exhibited in the person with EDS. Even knowing what type EDS one has, each case of EDS is individual.
EARLY DIAGNOSIS, is crucial to positive patient health. (Joan was only diagnosed in 2012).
The future of Ehlers-Danlos syndromes is a global community of patients, caregivers, medical professionals, and supporters, dedicated to saving and improving the lives of those affected by Ehlers-Danlos and related disorders.
THE EHLERS-DANLOS SOCIETY supports collaborative research initiatives, awareness campaigns, advocacy, community-building, and care for the EDS population.The goals are worldwide awareness - and a better quality of life for all who suffer from these conditions. Research is at the center of what they do, so that one day we will have a cure.
Joan of Austin gives a percentage of her income from classes and any sales on her Etsy site, to the relatively new Ehlers-Danlos Society so that there is continuing research into those genes and into care and information for those who suffer with EDS, especially children.
To find out more the link to the right will take you to the EDS site where you might learn about the types, how it is diagnosed, what doctors and Physical Therapists need to know and much more.
If you can donate to this cause and wish to do so the link is
More notes from Joan:
EDS is undoubtedly more prevalent than previously thought. Current research estimates incidence at one in 2,500 to 5,000.
Chronic pain is a well-established and cardinal manifestation of EDS and it is common for pain to be out of proportion to physical and radiological findings.
90% of EDS population has chronic pain for more than 6 months. 84% say it worsened over their lifetime. 89% had chronic pain before adulthood. 88% have taken pain medication and 51% have taken narcotics.
Those with hypermobility EDS experience frequent dislocations of joints which results in pain.
With each dislocation the ligaments, muscle, fascia and blood vessels all stretch. Due to the defect in collagen, all of that connective tissue is stretched beyond what normal should be. Each joint can subluxate or move out of place, repeatedly in just a single day thus causing micro-traumas repeatedly in the same tissue without healing successfully.
Spine abnormalities are correlated with back pain in young person with EDS and in certain types of EDS major organs can be adversely affected such as the heart and stomach or intestines.The latter two were the case with my dear friend Sarah. (deceased in 2016)
Physical Therapy is for many, an important part of EDS pain management, with the goal of reducing muscle spasm and toning muscles around joints. For those with EDS however, the approach is the opposite of traditional physical therapy, and has to be focused on long-term, gentle building of muscle tone. Special attention has to be paid to insure that PT does not continue to injure the person with EDS, that motion does not exceed normal range of motion and that joints are not ever hyper-extended or slipping in place. One has to be aware that with EDS and connective tissue disorder patients, any pain during physical therapy is probably signaling joint instability and subsequent tissue damage. The physical therapist who is highly knowledgeable and deeply understanding about these things can be useful to the long term health of those with EDS.To donate:
Thank you for reading this,
Joan. of Austin
Joan has had EDS since birth. You can read the story of how it affects her today on the page titled Joan and EDS.(when it's finished) The information on the left is a brief description of these connective tissue disorders and how Physical Therapy can help with the pain. The Society is getting the word out as many live in pain with EDS without being diagnosed.