Surviving and Thriving with Chronic Illness

Archives 2011

Video Results

Video: Part 1 The Driscoll Theory The Cause of POTS in the EDS Patient

Dr. Diana Driscoll shares the results of a clinical trial that tell us why EDS patients develop POTS. She explains her theory and treatment. Please see the attached article for the complete theory. In: 83 Comments | View

Video: Vascular Ehlers-Danlos

Dr. Diana discusses the vascular form of Ehlers-Danlos (EDS), Loeys-Dietz Syndrome and the hopeful research in this area. In: 36 Comments | View

Video: My Symptoms - Part 2

Dr. Diana, as Patient, continues to explain what it feels like to have Ehlers-Danlos, dysautonomia, CCSVI and some symptoms of MS. She discusses her progression over the last 7 years. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Multiple Sclerosis, POTS 76 Comments | View

Video: My Symptoms - Part 1

Dr. Diana, as Patient, explains what the symptoms of dysautonomia, POTS, Ehlers-Danlos and CCSVI feel like. You'll hear the progression of her symptoms over the last 7 years. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Multiple Sclerosis, Orthopedic Issues, POTS, Vascular abnormalities 111 Comments | View

Video: Clinical Trial 2 for EDS

Dr. Diana announces her second clinical trial for EDS patients. This one requires no travel! In: 49 Comments | View

Video: Update - emergency—acute episode of high intracranial pressure

Dr. Diana shares her experience with an acute episode of high intracranial pressure. Recovering 5 hours later. In: 48 Comments | View

Video: Emergency - acute episode of high intracranial pressure

Dr. Diana as patient shares with you an acute episode of high intracranial pressure. Is this happening to you? In: 34 Comments | View

Video: Elizabeth Taylor—Did she have EDS?

Dr. Diana as Patient discusses why she believes Elizabeth Taylor had Ehlers-Danlos Syndrome In: 33 Comments | View

Video: Clinical Study for MS and/or EDS Patients—- now open!

Join our clinical trial as we look at potential vascular changes in the fundus (back of the eye) in patients with Multiple Sclerosis and/or Ehlers-Danlos Syndrome. Are there signs of CCSVI? In: 48 Comments | View

Resource Results

NOW COMPLETED Head Circumference Growth in Children with Ehlers-Danlos Who Develop…

This trial is NOW COMPLETED.
This trial involves NO TRAVEL and NO COST to you!
It is known that 33-50% of Classic and Hypermobile Ehlers-Danlos Syndrome patients eventually develop dysautonomia, otherwise known as “POTS” (Postural Orthostatic Tachycardia Syndrome). Some of these patients develop dysautonomia as a result of a retroflexed odontoid, Chiari 1 Malformation or cranial settling and the resulting basilar impression. Many Ehlers-Danlos patients suffer with the same symptomology with no evidence of a cause according to MRI imaging.

It is the author’s hypothesis that low-level External Communicating Hydrocephalus appears to be responsible for the constellation of autonomic and cranial nerve symptoms, and if present in the very young, an analysis of head circumference growth in the first 15 months of life should reflect abnormally rapid head growth,
supporting this hypothesis. NCT 01367977

View | Studies

Head Circumference Growth in Children who Develop Multiple Sclerosis later in life

This trial involves NO TRAVEL and NO COST to you!
Multiple sclerosis patients commonly develop generalized ventricular dilation with or without cerebral atrophy over time. Case studies in the literature have noted some multiple sclerosis patients develop the typical “normal pressure hydrocephalus” triad of dementia, gait disturbance and incontinence which were responsive to shunts.

Many patients with connective tissue disorders (Ehlers-Danlos Syndrome) develop Multiple Sclerosis and studies indicate that in the Multiple Sclerosis population, there exists over 10% more Ehlers-Danlos patients than in the normal population.

Because studies are indicating a form of external communicating hydrocephalus in the Ehlers-Danlos population, the author hypothesizes the same type of hydrocephalus may occur in the Multiple Sclerosis population.

To evaluate this hypothesis, investigators will retroactively evaluate the head circumference of Multiple Sclerosis patients between birth and 15 months (before the skull sutures have closed). NCT 01377805

View | Studies

1 Syndrome of occipitoatlantoaxial hypermobility

Mechanical causes of Chiari and anterior brain stem symptoms in patients with Ehlers-Danlos Syndrome and their symptoms

View | Articles & Hand-outs

15 Organic brain disease mastocytosis

Case studies and descriptions of how the brain is affected when invaded by mast cells. I experienced every single one of these symptoms. Does it sound like you?

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14 Neural monitoring of vasovagal syncope

What happens to our bodies before we faint. Notice that even our cortisol level is affected.

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13 Study of Patients Perceptions of Disability in Mastocytosis

Mastocytosis is disabling. (So is EDS. And so is POTS. Do you think having three rare and disabling conditions simultaneously is disabling? I would say so.)

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12 Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders

Hyperadrenergic POTS—we’re “special” and more likely to have mast cell disease. It is easy to miss. Don’t miss it. It can be life changing to be treated.

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11 Thalamic atrophy and cognition in multiple sclerosis

The injured thalamus can cause brain fog/dementia.

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10 The differential diagnosis of children with joint hypermobility—a review of the literature

A great look back at EDS—this is how we fill in the missing pieces.

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9 EDS—Classic Type

A good summary of Classic EDS, including our tendency to develop POTS.

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8 Idiopathic External Hydrocephalus Natural History

This explains the basics of external hydrocephalus—likely not as benign as was first thought!

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7 Cerebral Spinal Absorption Disorder of Arachnoid Villi

Our arachnoid villi may be abnormal from birth. The arachnoid villi are what drain the CSF from our brains. They are easily damaged by viruses and viral antibodies.

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6 Joint Hypermobility and anxiety—the state of the art

EDS patients are prone to anxiety - amazing.

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5 Anxiety Disorders in the Joint Hypermobility Syndrome

Discussion of EDS and anxiety—it may manifest as a panic attack, a low level of free-floating anxiety, OCD or overachievement.

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4 External Hydrocephalus in Small Children

Great information! Can you how it is likely what is happening in EDS children?

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