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Ehlers-Danlos Syndrome, A Disease of Many Faces 🦓

Updated: Dec 7, 2023

Professor Rodney Grahame. legendary for all his years of pioneering work for EDS perhaps said it best when he spoke about the concerns present in the medical field related to diagnosis of Ehlers-Danlos and Joint Hypermobility Syndrome. “Failure to diagnose and treat correctly results in needless pain and suffering and in many patients to a progressive decline in their quality of life, and in some to a loss of independence.” Additionally, “no other disease in the history of modern medicine has been neglected in such a way as EDS.”

This is a sad and unnecessary reality for so many patients, as “there is a common tendency in medicine when faced with medically unexplained symptoms to assume that they are psychogenic in origin.” This approach or opinion by medical practitioners can have disastrous consequences for the patients. Can you imagine being a patient in pain, suffering, seeing endless specialists and enduring countless tests, only to be told its all in your head?

If you suffer from Ehlers-Danlos Syndrome or any chronic disease for that matter, than the above noted statement airs a tone of familiarity and discontent, especially during a time when there is “hardly a single medical speciality that is untouched by this condition.” The symptoms of EDS are ever growing and no one of us fit into any particular box so to speak, which is what partially contributes to much of the confusion and doubt as it relates to EDS.

Nonetheless, we are real and so are our symptoms! The EDS community is growing larger and larger, which means so is the need for specialists, resources and referrals so we can ensure proper care for those battling with collagen disorders and chronic pain suffers alike.

EDS, chronic pain or any invisible illness are far from being considered minor in their affects upon one’s body or the emotional toll that can result for those suffering with these conditions. There is sufficient and factual evidence of the multisystemic affects caused by EDS and the intense suffering that can result.

Actify Physiotherapy & Wellness is a place where you can find comfort, understanding, knowledge and resources for those suffering with collagen disorders, chronic pain, joint instability and musculoskeletal disorders. Take a deep breath, you have come to the right place! Our founder, Dr. Marcia Perretto has a passion for personalized care, taking the time to understand each patient as a unique individual. Dr. Perretto not only understands the disease, but also shares in the patients experience as she herself has an EDS diagnosis, a truly unique perspective. 🙏🏻

Contact us today to learn more and schedule your first appointment and come experience the difference!

Ehlers-Danlos Syndrome, A Disease of Many Faces

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