Wednesday, December 23, 2009
Love and Hope,
Monday, December 21, 2009
1) Increased Flexibility – ‘double-jointedness,’ majority of joints extend past 180 degrees
2) Skin – extra soft, silky-smooth skin that is very thin, easily bruises and is slow to heal, scarring that is characteristically smoother in texture and lighter in color than surrounding skin
3) Frequent Injury – accident prone and clumsy, due to decreased proprioception (the body’s sense of its own movement through 3D space)
4) Anesthesia Problems – anesthetics (such as novicaine and lignocaine) take longer to take affect and ware off faster than normal
5) Joint Pain – frequent joint pain which does not respond to typical treatments such as ice, rest and anti-inflammatory medication, can be brought about suddenly without any direct injury or trauma and lasts longer than normal muscle inflammation
- If these symptoms sound familiar, it may be worth investigating Hypermobility Syndrome as a possible diagnosis to help explain your medical problems. Below you will find the Beigton Test and Brighton Criteria, the two medical tests used along with family history and certain exclusionary exams (such as Xrays, MRIs and blood work) in diagnosing HMS. First, use the Beighton Test to see if you have Generalized Joint Hypermobility, the primary symptom of HMS, which can be determined by a score of 4/9 or higher. Then, use the Brighton Criteria to asses whether or not HMS is the likely cause of this characteristic increased joint flexibility. Since HMS is a genetic disorder, it may be beneficial to have other family members perform these tests, or to at least have an accurate and detailed family health history at hand. If the Beigton Test and Brighton Criteria indicate that HMS is likely, it may be beneficial to talk to your doctor about Hypermobility Syndrome and Ehlers-Danlos.
There is an excellent new study out this month in the Disability and Rehabilitation Journal, which investigates the effects disrespectful encounters with health care professionals has on Ehlers-Danlos and Hypermobility Syndrome patients. The study found that these negative experiences are not only psychologically and emotionally damaging, but can adversely influence the long-term health of such patients who are often hesitant to seek medical assistance. Below you can find an abstract of the study as well as a link to a newspaper article which provides another great overview. This study sets an excellent precedent for future investigations into the impact of Hypermobility on patients’ lives, as well as the consequences of the current hostility of the medical community towards the disorder.
DIGNITY NOT FULLY UPHELD WHEN SEEKING HEALTH CARE: EXPERIENCES EXPRESSED BY INDIVIDUALS SUFFERING FROM EHLERS-DANLOS SYNDROME
Aim - The principle of human dignity has assumed importance in ethics and constitutional law throughout the 20th century in the Western world. It calls for respect of each individual as unique, and of treating him or her as a subject, never as a mere object. As such, the principle constitutes an ethical cornerstone in health care. Patients suffering from Ehlers-Danlos syndrome (EDS) challenge medical care and knowledge in health-care professionals' as symptoms sometimes are vague. Individuals with this disorder have reported not being respected when seeking health care.
Purpose - To describe encounters in health-care situations when individuals suffering from EDS experienced that their dignity was not fully upheld. A further aim was to describe the long-term consequences of these experiences.
Method - A study-specific questionnaire was designed, where individuals with EDS described their encounters with health care from a personal perspective.
Results - After qualitative content analysis, the following five categories were identified: 'Being ignored and belittled by health-care professionals,' 'Being assigned psychological and/or psychiatric explanations', 'Being treated and considered merely as an object', 'Being trespassed in one's personal sphere' and 'Being suspected of family violence'. Consequences of these encounters were 'Mistrusting the physician' and 'Risking bad health'.
Conclusions - The memory of not being respected is substantial for individuals with EDS and can last for years. As a result, lack of trust for the health-care system is created and they may experience difficulties in future encounters with health care. Therefore, health-care professionals should base their actions on norms that protect human dignity and confirm each patient as a unique human being with resources and abilities to master their own life.
Saturday, December 19, 2009
Please check out my new article in the Daily Tar Heel, the University of North Carolina at Chapel Hill's on-campus newspaper. It is more of a human interest piece than about awareness, but being able to put a face to the disease is extremely useful in getting people to care. Please read and pass along the hope to others!