Toronto General Hospital |
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Phone: 416 340 4800 ext. 6536Fax: 416 340 3792Email: firstname.lastname@example.org
The GoodHope EDS Clinic at UHN is a multi-disciplinary health care service to diagnose and treat patients with EDS.
There are 13 different types of EDS. Hypermobile EDS is by far the most common type and does not have a genetic mutation identified at this time. The other 12 types of EDS are much rarer and have a genetic mutation identified with them. Diagnosis of EDS requires a thorough assessment by an experienced practitioner. Genetic testing is only required for patients who meet the clinical criteria for one of the rarer types of EDS.
EDS is a multi-system disorder giving rise to multiple symptoms affecting health and quality of life to varying degrees. Presently, there is no cure.
The Spectrum of Hypermobility
Hypermobility is common in the general population (approximately 20%). Joint hypermobility can affect 1 to 2 joints (localized joint hypermobility) to multiple joints (generalized joint hypermobility). Hypermobility alone is not diagnostic for EDS. Many patients with hypermobility live lives free of pain and complications. For some patients, their generalized joint hypermobility (GJH) may cause chronic pain, joint dislocations and other complications (such as autonomic dysfunction and gastrointestinal complications) which may be diagnosed as Hypermobility Spectrum Disorder (HSD). Our clinic will use the very specific criteria that has been developed to asses and diagnose EDS when you are seen by our team members.
Collagen is a protein that provides flexibility and strength to the body tissues. Defective production or maturation of collagen in the body due to a gene defect causes Ehlers-Danlos Syndrome. The faulty gene can be inherited from the parent but can also occur for the first time in a person. This results in formation of abnormal or weak collagen that is unable to support the body organs and other tissues.
Do your joints bend beyond the normal range of motion? Do you find that you bruise more easily or have trouble healing from minor wounds? Do you experience frequent or chronic headaches and migraines? Learn more about the
signs and symptoms of EDS.
The route to diagnosis may depend on several factors. The pathway begins with assessment of how mobile the joints are in comparison with the general population, identification of abnormal scarring and stretchy skin and recognition of other medical issues associated with EDS.
A brief set of questions that may help suspect the diagnosis of EDS are outlined as below:
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Individuals with symptomatic joint hypermobility and/or features of hEDS who do not meet the criteria incorporated in the new 2017 EDS nosology and present with specific secondary musculoskeletal manifestations are now labelled with the descriptive term of "hypermobility spectrum disorders". At present, hypermobility spectrum disorders are variable conditions "at bridge" between non-syndromic, asymptomatic joint hypermobility and the hypermobile EDS. Regardless, HSD and hEDS can be equal in severity, but more importantly, both need similar management, validation and care.
The first of its kind in Canada, the GoodHope Ehlers-Danlos Syndrome Clinic at Toronto General Hospital offers patients coordinated care from a wide spectrum of specialists, and is a single point of contact for those living with this illness. All donations to the Clinic, up to $1 million will be matched – doubling our reach and ensuring advocacy efforts, patient and caregiver education initiatives, and vital research is undertaken to meet the needs of this unique and often misunderstood patient population.
Donate to the GoodHope EDS Clinic