EDS Educational Session in Mason, Ohio
Chronic Pain Sufferers should consider Ehlers-Danlos Syndrome (EDS):
An under-diagnosed medical disorder
By John Ferman, Founder of the National EDS Awareness program.
Jennifer McKain – Co-leader of the Cincinnati EDS Support Group
Learn more at a free informational session at the Mason Community Center on February 6, 2014.
If you missed the presentation the slides are available through the link below.
Do you or someone you know have “loose joints”, extreme flexibility, chronic joint pain or Fibromyalgia-like symptoms? In addition, they might experience irritable bowel (IBS), non-restorative sleep, fatigue, TMJ, partial or full joint dislocations. This person may have EDS or Ehlers-Danlos Syndrome.
It’s not rare, just rarely diagnosed!
Only 5% of Ehlers-Danlos Syndrome (EDS) sufferers are correctly diagnosed. According to a recent study: each year in the US, 650,000 additional sufferers are undiagnosed or misdiagnosed due to physician oversight or lack of knowledge about EDS. 70% of EDS patients report that it took more than 10 years to get their proper diagnosis. Our mission is to spread awareness and promote early diagnosis in order to improve patients’ quality-of-life, reduce joint damage and prevent secondary health problems.
COMMON MIS-DIAGNOSES OF EHLERS-DANLOS SYNDROME
What is Ehlers-Danlos Syndrome?
EDS is a genetic disorder causing faulty collagen. Collagen protein provides the basis for strong connective tissues and healthy skin, and is a building block for all the body’s systems. Collagen acts as the “glue” that holds the body together. In EDS, this “bad glue” creates fragile and stretchy connective tissues in the joints, muscles, skin, blood vessels, organs, and more. The resulting pain and symptoms tend to progress with age and “wear & tear” on the body.
What are the symptoms?
Symptoms and severity can vary from one individual to the next. They can range from mildly loose joints to life-threatening complications.
A common sign is chronic pain along with extra-flexible or hypermobile joints. (Were you “double-jointed” or able to do funny tricks when you were young or talented at yoga stretches?) Because flexibility tends to decrease with age, it is important to be examined by a knowledgeable physician. Unstable joints can easily subluxate (shift out of alignment) during normal daily activities resulting in pain and muscle tightness. (Most people don’t notice this is happening, unless they actually dislocate a joint.)
Other medical problems can occur due to EDS (but are not always present). May include: stretchy skin, easy bruising, slow wound healing, stomach/GI problems, IBS, autonomic nervous system dysfunction (POTS, low BP/high heart rate), non-restorative/disturbed/light sleep, chronic fatigue, TMJ, GYN or pregnancy complications, blood pooling in limbs, vascular aneurysms, mitral valve prolapse, nerve pain, early osteoporosis or osteoarthritis, organ prolapses & more.
Diagnosed by a Geneticist:
A physical examination is required, including taking an extensive family history and using the Brighton Criteria along with the Beighton scale, which measures joint hypermobility. Genetic tests may rule out a few of the 6 types of EDS.
Geneticists at the Cincinnati Children’s Hospital Connective Tissue Clinic will diagnose both children and adults.
Finally getting the diagnosis can be a relief to know that the symptoms are real and have a name; however, there is no cure or easy ‘fix’. But, it does allow the patient and their families to know what they may be facing and allow them to become educated and proactive about the care they seek and require.
Attend an EDS Informational Session in Mason:
Most people with EDS – and the people who care for them – don’t know where to turn for information, advice and help with the challenges surrounding EDS.
At www.edsawareness.com a.k.a. www.chronicpainpartners.com we help form EDS Support Groups and provide educational information through an EDS leadership network and via our bi-monthly internet Doctor Speaker Series.
This article and the Reference links below are posted at http://www.chronicpainpartners.com/mason-ohio-educational-session