Tag Archives: EDS

Dr. Diana Driscoll With an Exciting Ehlers-Danlos Update

What a journey this has been! Although a very challenging time, I feel incredibly blessed to know so many others on the same path. Please know that you help me, likely much more than I help you!

I wanted to reach out to those of you who suffer from POTS (or any autonomic dysfunction). This has been the most difficult aspect for most of us to deal with, and those of you who know me, understand. The symptoms can include the inability to stand beyond a few minutes, tachycardia, digestive issues, poor temperature control, anxiety, tremors, balance problems, twitches, myoclonus, fasciculation, memory problems, dizziness, fatigue, nausea, abdominal pain, weakness, hormonal fluctuations, difficulty breathing, and… well, why don’t we just stop there and take a breath?

We’ve also noticed that too many people with EDS also develop multiple sclerosis. Some of you are aware that a soft cervical collar at night time has helped us, as has Diamox (a diuretic that crosses the blood-brain barrier, taking fluid pressure off of our brains). This has been a consistent finding, but no one has been able to explain to me why it helps, and why it doesn’t eliminate the problem entirely, which has been a great source of frustration for many of us.

While researching EDS, M.S. and POTS, and considering my own symptomology and yours (and I’ll confess to being my own guinea pig, too), I’ve come up with a theory about what is happening, why, and what we can do about it. It’s a bit complicated to go into too much detail here, but understand that it all relates to sluggish flow of the CSF and our change in posture causing the brain to sink and rise, leading to chronic brain edema and a type of “normal pressure hydrocephalus”.

Because my son and I became symptomatic after a virus (although we had small symptoms that we could ignore prior to the viral attacks), I believed that the virus, or its antibodies, somehow began the cascade of symptoms. But because our children and my sisters and mother also had an interesting constellation of symptoms, I felt there was also a hereditary component to our poor CSF and/or veinous drainage from our brains.

As many of you know, Diamox has relieved much of the pressure on my brain, but now I will be having some imaging done to see if I have any blockages in my veins that could be opened (with a balloon or stent) to help with the condition. This is such a difficult condition to treat because it is dynamic (it changes with position, for example), yet medications are static (they cause one change).

I was beginning to show signs of multiple sclerosis, which is also not unusual for EDS patients. Research is expanding quickly and I will have some new information for you soon, I’m sure.

Until then, never give up.

Announcing Lunch and Lounge with Dr. Diana

Portrait Dr. Diana Driscoll

Dr. Diana Driscoll

Effective 10/22/2010 we are going to put Lunch and Lounge on hiatus for a while.  We’ll make an announcement here when we bring it back.  Thanks to all of those that participated.

Many patients with questions and concerns regarding their challenges with Ehlers-Danlos Syndrome have contacted Dr. Diana for help.  Starting Friday, June 11 at Noon Central time, Dr. Diana would like to help as many people as possible by holding weekly conference calls.

Ocular Manifestations of Ehlers-Danlos Syndrome

It’s hard to find a comprehensive source for the ocular problems experienced by patients with Ehlers-Danlos Syndrome.  Our very own Diana Driscoll, O.D. wrote this article, placing the most up to date information in one place.

Our practice continues to be sought out by patients for help in their quest for answers to the potential ocular complications related to Ehlers-Danlos Syndrome, such as dry eye syndrome and keratoconus, as a result the number of patients we see with EDS grows rapidly.

This updated eBook includes many color pictures and references. It is the only book covering EDS and the eye. Ehlers-Danlos Syndrome: Your Eyes and EDS is now available on Amazon.com

Dr. Diana Driscoll Invited to Speak at the Ehlers-Danlos National Foundation 25 Year Silver Celebration

Dr. Diana DriscollWe are happy to report that Dr. Diana Driscoll has been asked to speak again at the Ehlers Danlos National Foundation’s  Conference.  This year’s conference will be the 25 Year Anniversary Silver Celebration of the Ehlers-Danlos National Foundation.  The conference is scheduled for July 15-17, 2010 in Baltimore, Maryland at the Renaissance Harborplace Hotel, and thus far includes over 17 doctors and researchers speaking on this under-diagnosed, yet often disabling condition. 

Pediatrician’s Guide to Ehlers-Danlos

I have not done and article on Ehlers-Danlos in a while.  We have updated the ocular symptoms of EDS resources and made them available with color photos on Amazon.com. The Eye Doctor’s Guide to Ehlers-Danlos also includes a link to a resource sheet to give to your doctors.

Dr. Diana Driscoll Speaks at the Ehlers-Danlos National Foundation Meeting

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.

An updated version of Your Eyes and Ehlers-Danlos Syndrome is now available, with color photos, on Amazon.com as a downloadable eBook.

This entry has been cross posted on The Total Eye Care Website.

Dr. Diana Driscoll To Speak Before the Ehlers-Danlos National Foundation National Meeting

Dr. Diana DriscollAs many of you may know Dr. Diana Driscoll is on medical disability due to the autonomic nervous system complications from Ehlers-Danlos Syndrome and has not seen patients in the office since August of 2004. In the course of her research trying to find what was making her ill she accumulated considerable knowledge in Ehlers-Danlos and the complications associated with it. Dr. Driscoll has been asked to share her knowledge at the Ehlers-Danlos National Foundation Meeting in Houston July 31st – Aug 2.

Ehlers-Danlos Syndrome is a connective tissue disorder that affects multiple systems and organs. EDS, as it is called by patients that have it, has numerous different types. The most common types of EDS are classical and hypermobile. Another, rarer type called the vascular form, is the most dangerous because it involves weakening of the blood vessels which may rupture (an aneurysm), which is often fatal.

The most common symptoms of EDS are hyper-flexible joints (people sometimes refer to this as “being double Jointed”) that are flexible beyond the normal range of movement, skin that is very stretchy, soft, bruises easily and is sometimes fragile (tears easily). EDS patients often complain of joint pain that may be mistaken for arthritis, yet the x-rays are not consistent with arthritis.

The most debilitating complication 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 etc. 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.

The medical literature reports that the incidence of EDS is approximately 1 in 10-14,000, however doctors report seeing it clinically more frequently. It is hypothesized that once doctors are made more aware of how to diagnose EDS that the reported incidence will be more like 1 in 3-5000 people.

Once doctors become more aware of how to identify patients with EDS I believe that the incidence reported in the general public will rise markedly. I have personally identified numerous patients in our practice that have EDS and concur with the incidence of 1 in 3-5000. I, in fact, would not be surprised if it was indeed more common than 1 in 3000.

UPDATE: An updated and expanded version is now available on Amazon.com, Ehlers-Danlos Syndrome: Your Eyes and EDS.

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