Ehlers-Danlos Syndrome: Not Rare, Just Rarely Diagnosed

Learn the Symptoms

While the Ehlers-Danlos National Foundation (EDNF) puts current Ehlers-Danlos Syndrome (EDS) diagnosis at one out of every 2,500 to 5,000, estimates of the actual number of cases is much higher. Misdiagnosis and a lack of EDS awareness among medical professionals often results in patients experiencing years of suffering without proper diagnosis and treatment.

EDS is a hereditary group of connective tissue disorders that effects collagen production throughout the body. Understanding the symptoms of this life-changing syndrome is crucial. Once recognized and diagnosed, EDS sufferers can work with their doctors and specialists to develop a plan to move forward. Symptoms include:

Hypermobility — Often described as “double-jointed,” EDS sufferers have extreme flexibility. They will also likely experience hyperextended or dislocated joints.

Loose Skin — An EDS sufferer’s skin may tear or bruise easily and be slow to heal.

Joint Pain — Severe joint pain is common among those with EDS.

Low Blood Pressure – Low blood pressure, light-headedness and dizziness could point to a vascular form of EDS.

Mitral Valve Prolapse — Weakened heart valves result in diminished blood flow between the heart chambers for some EDS sufferers.

Headaches — Painful headaches or migraines caused by muscular spasms, circulatory constriction or displacement of the vertebrae is common among EDS sufferers.

TMJ — EDS patients typically complain that their temporomandibular joint dislocates, creating a series of painful craniofacial symptoms.

Using the Beighton Scale Checklist, people can gauge if their symptoms may be better reviewed by a doctor trained and experienced with EDS. Visit the EDNF site for a physician directory, or contact Dr. Mitakides, a member of the EDNF professional advisory network, about your concerns.