EDS COMPLICATIONS AND TREATMENT CONSIDERATIONS

Obtain my information packet by emailing golderwilson@gmail.com

You have contacted me to request information on Ehlers-Danlos syndrome (EDS) and related connective tissue laxity disorders. This packet contains 1) history, 2) natural-family history, and 3) physical examination forms for your self-assessment followed by 4) summary of finding frequencies in my EDS patients, 5) general information on how clinical and DNA findings in EDS fit together, and 6) a sample summary letter that for a fee of $100  I could write for you to take to your doctors as discussed below. Those who request a summary letter, have severe impact from EDS as indicated on the lower part of the history form, and have interest in social security disability, I can refer to a specialist although there is no guarantee you would qualify.

The history and physical forms list common findings that were noted in 946 EDS outpatient evaluations and converted into standard forms I used on a subsequent 710 outpatients (596 females and 114 males). You can see the full results in the article: Clinical analysis supports articulo-autonomic dysplasia (reference 1 in the attached information) that includes the summary of finding frequencies attached here. In essence I found that people with more than 10 history and 8 physical findings had EDS by traditional criteria and that women have higher scores than men (more than accounted for by 3 extra points for questions regarding gynecologic issues). Most findings of patients with hypermobile hEDS (more flexibility complications like subluxations, dislocations, and deformations like scoliosis and flat feet) versus those with classical EDS (more atypical cigarette-paper or keloid scars, less hypermobility complications) are similar, the reason I emphasize recognition of a general EDS clinical pattern before considering specific types. 

An Information Service for EDS and related disorders

What does the service consist of?

After 40 years of academic and private practice encompassing over 27,000 new medical genetic evaluations, I am changing my genetics practice to an information service that will be backed by continued article and book publication. I stopped in-person clinics in 2018 due to my own arthritis issues and now will provide information including standardized history and physical forms that will allow people to assess their probability of having an EDS diagnosis. Patients can send in their forms for my interpretation and I will provide a packet with a summary letter that they can take to their doctors to obtain appropriate diagnoses of EDS and dysautonomia. I will provide the information free of charge but ask payment of $100 to provide the summary letter and information packet. I no longer have the resources to coordinate DNA testing but the $100 fee will include my interpretation of DNA testing provided with the history-physical information or sent to me afterwords. For patients with large numbers of history-physical findings on my standard forms and who additionally register significant difficulties with work, school, and activity functions on my physical form, I also offer referral to a specialist in social security disability who can help them with an application; there is of course no guarantee that the specialist or court will approve their application.
​.
The next page has a description of the information service that describes options for the summary letter and possible referral for disability consideration. If you are interested in receiving the described information package you should email me at golderwilson@gmail.com and I will forward it to you with the introductory letter, medical history/natural-family history/physical forms along with a table of these finding frequencies in 710 EDS patients, discussion of how EDS clinical and DNA findings correlate, an overview of preventive management and therapy for EDS, and an example of my summary letter. The latter table, correlation discussion, overview of therapy, and summary letter example are shown on later pages of this website.

Frequency Specific Microcurrent (FSM) offers exciting promise in working with tissues unresponsive to conventional efforts such as nerve pain, damage or injury, scar tissue, adhesions, and the ability to facilitate healing of acute and chronic injuries. GMA also finds it is a useful supportive treatment as part of comprehensive treatment for chronic conditions like chronic Lyme disease, CFS, and fibromyalgia.

The frequencies appear to change a variety of conditions and tissues, and change pain and function in a large number of clinical conditions. FSM is especially effective at treating nerve and muscle pain, inflammation, and scar tissue.

Compression Garment Reduces Orthostatic Tachycardia and Symptoms in Patients With Postural Orthostatic Tachycardia Syndrome //

Postural orthostatic tachycardia syndrome (POTS) is a chronic form of orthostatic intolerance associated with a significant symptom burden. Compression garments are a frequently prescribed treatment, but the effectiveness of waist-high compression has not been evaluated in adults with POTS.

Objectives
This study evaluated compression garments as a treatment for POTS using a head-up tilt test (HUT), and a noninflatable core and lower body compression garment. //

Conclusion
Abdominal and lower body compression reduced heart rate and improved symptoms during HUT in adult patients with POTS. These effects were driven by improved stroke volume with compression. Abdominal compression alone might also provide a clinical benefit if full lower body compression is not well tolerated. (Hemodynamic Effects of Compression in POTS;