Ehlers-Danlos Syndrome Patients Seek Respect, Understanding
People who suffer with Ehlers-Danlos syndrome, an inherited connective tissue disease, have reported not being respected when seeking medical care. The lack of respect can have an emotional impact on these individuals that can last for many years and affect their ability to seek health care.
Ehlers-Danlos syndrome is a condition in which there is a defect in the tissues that provide support to the body’s muscles, skin, and ligaments. This results in unstable joints, which are the result of faulty collagen, a protein that provides strength and elasticity to connective tissue.
As a result, people who have Ehlers-Danlos syndrome, which affects approximately one in every 5,000 people, according to the Ehlers-Danlos National Foundation, experience a range of unusual and painful signs and symptoms. These can include loose/unstable joints which are prone to frequent dislocations, joint pain, fragile skin that bruises or tears easily, severe scarring, slow and poor wound healing, development of fleshy lesions (molluscoid pseudo tumors), chronic debilitating musculoskeletal pain, poor muscle tone, and gum disease.
There a six major types of Ehlers-Danlos syndrome, which are classified according to the signs and symptoms. They include hypermobility, classical, kyphoscoliosis, arthrochalasia, dermatosparaxis, and vascular. The vascular type is considered to be the most serious, because there is the possibility of organ and blood vessel rupture. The syndrome affects both males and females of all ethnic and racial backgrounds.
The current study, which was published in the January 2010 issue of Disability and Rehabilitation, consisted of a questionnaire directed at individuals who suffer from Ehlers-Danlos syndrome. The men and women described their encounters with people in health care as “being ignored and belittled by health-care professionals,” to “being assigned psychological and/or psychiatric explanations,” and “being treated and considered merely as an object.”
As a result of these experiences, the individuals noted that they were “mistrusting the physician” and “risking bad health.” The researchers note that health-care professionals should protect human dignity and treat each patient as a unique human being who has the ability to master his or her own life. To learn more about Ehlers-Danlos syndrome, you can visit the Ehlers-Danlos National Foundation website.
Berglund B et al. Disability and Rehabilitation 2010 Jan; 32(1): 1-7
Ehlers-Danlos National Foundation