Experimental Treatments for EDS

Ehlers-Danlos syndrome (EDS) is the name given to a group of 13 types of genetic disorders affecting the connective tissue that provides structure to joints, blood vessels, skin, and different organs. Symptoms of EDS vary from patient to patient and usually range from stretchy and fragile skin to heart and lung problems.

Apart from treatment options currently available to manage the symptoms of the disorder, several experimental treatments are also in the pipeline.

Edsivo (celiprolol)

Edsivo is an experimental therapy for vascular EDS which is being developed by Acer Therapeutics. It is a beta-1 receptor antagonist that works by promoting collagen synthesis in blood vessels to reduce pressure in those that are prone to rupture.

Edsivo was earlier granted priority review by the U.S. Food and Drug Administration (FDA). A complete response letter was issued in June 2019 stating that an adequate and well-controlled trial is needed to evaluate Edsivo’s efficacy in vascular EDS patients.

Excellagen

Excellagen is a highly-purified type 1 collagen-based topical gel originally developed by Olaregen Therapeutix, which was later acquired by Generex Biotechnology. Topical administration of Excellagen over a wound stimulates the production of growth factors such as platelet-derived growth factor that help in wound repair.

Excellagen is approved by the FDA for 17 different types of wounds and is now awaiting orphan-drug designation for use in EDS patients.

Prolotherapy

Prolotherapy, also known as non-surgical ligament and tendon reconstruction and regenerative joint injection, is a way of stimulating the body to repair weakened joints and produce new collagen tissue. Prolotherapy is generally of three types:

  • Growth factor injection prolotherapy consists of the injection of growth factors to stimulate the growth of certain cell types in the joints.
  • Growth factor stimulation prolotherapy involves the injection of certain substances, such as dextrose, that stimulate the body to produce growth factors.
  • Inflammatory prolotherapy consists of the injection of substances that cause the immune system to produce growth factors.

Prolotherapy is being advocated as a treatment option for hypermobile EDS because of its easy administration and the fast pain relief it offers.

 

Last updated: Nov. 10, 2019

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