Dr. Diana Driscoll spoke to doctors and patients at the Ehlers-Danlos National Foundation Meeting (EDNF) in Houston, Texas August 1st and 2nd. Her topic was “Your Eyes and Ehlers-Danlos Syndrome”. Dr. Driscoll, herself is an Ehlers-Danlos Patient, therefore her lecture extended beyond the ocular effects of Ehlers-Danlos Syndrome (EDS) and included some of the treatments and techniques that she has found to have increased her functionality.
The National EDNF Meeting is held every other year and is presented as an opportunity for patients with EDS, doctors and researchers to unite in their quest for answers to this debilitating condition.
Ehlers-Danlos affects multiple body systems requiring a multidisciplinary team of doctors to assist patients. Physicians of many specialties were present as speakers, patients and attendees.
About Ehlers-Danlos Syndrome
Ehlers-Danlos Syndrome is an inherited connective tissue disorder affecting our body’s production of collagen used to make connective tissue. Connective tissue is the glue that holds our body together making up approximately 80% of our body weight. The most common symptoms of EDS affect the joints and skin.
Skin symptoms are characterized by thin, soft, velvety skin that bruises easily and stretches. Tearing of the skin is common along with slow wound healing. Scars are often look like “cigarette paper”.
Joint symptoms include hyperextensible joints (joints that extend beyond their normal range of motion). People with hyperextensible joints have often been called “double jointed”. Because the ligaments and tendons are “stretchy” the joints dislocate or become subluxated easily. The premature onset of osteoarthritis is common and is often difficult to identify in an X-ray.
Some of the more common ocular symptoms of EDS are keratoconus, angioid streaks, and myopia. EDS patients are not candidates for LASIK. At Total Eye Care we are keenly aware of the potential complication that can result from any corneal surgeries performed on Ehlers-Danlos patients.
One of the most debilitating complications of EDS is a type of dysautonomia called Postural Orthostatic Tachycardia Syndrome or POTS. Dysautonomia is the result of our autonomic nervous system ceasing to function properly. Our autonomic nervous system regulates functions that our body does automatically such as digestion, breathing, heart rate, blood pressure, body temperature, blood sugar regulation, hormonal/endocrine imbalances and our sleep cycle.
Postural Orthostatic Tachycardia causes a person’s heart to race when they stand still. When a normal person stands, their heart rate may go up a few beats per minute and stabilize. A POTS patient’s heart rate will go up over 30 beats per minute. If their body can not compensate, a POTS patient will often faint or shake uncontrollably. A tilt table is used to test for POTS.
It is estimated that 40% to 70% of EDS patients suffer from POTS. Many patients with POTS don’t know that they have EDS and are often mis-diagnosed with fibromyalgia or chronic fatigue syndrome. It is thought that autonomic dysfunction is caused by instability of the cervical spine thus interfering with the brain stem’s ability to regulate our bodies.
The classification system for Ehlers-Danlos Syndrome consists of 6 types; Classical, Hypermobile, Vascular, Kyphoscoliosis, Arthrochalasia, Dermatosparaxis. The prevalence of EDS is approximately 1 in 3000. EDS affects both males and females and is not specific regarding race or ethnicity.
Ehlers-Danlos Syndrome is a genetic disorder, however many patients, such as Dr. Driscoll, are unaffected until the symptoms are triggered by a virus.
A copy of the lecture slides for “Your Eyes and Ehlers-Danlos Syndrome“ is available in PDF form as is a handout for patients to give to their eye doctor before their eye exam.
This entry has been cross posted on The Total Eye Care Website.