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Reducing the stigma of chronic conditions will lead to improved quality of life

Reducing the stigma of chronic conditions will lea
Photo: Reducing the stigma of chronic conditions will lead to improved quality of life
Ehlers-Danlos Syndrome, also known as EDS, effects between 1 in 2,500 and 1 in 5,000 men and women, but is rarely spoken, most likely due to the lingering stigma associated with some of the more common secondary symptoms of the condition.

EDS is a group of disorders that affect connective tissue, and is usually characterised by hypermobility. The hereditary condition is currently classified into 13 different sub-types, each with its own clinical criteria for appropriate diagnosis.

“Connective tissue is important to maintain structure and support of the skin, blood vessels, bones and organs,” says pelvic floor physiotherapist, Rachel Fitt.

“Connective tissue is made up of fibrous material, cells and collagen. Those with EDS have a defect in the protein, collagen, effecting production.”
The most common symptom is joint hypermobility. Those with joint hypermobility may have frequent dislocations and/or subluxations, and are able to hyperextend various joints.

Other symptoms may include (and are dependent on sub-type):
  • Soft, velvety, stretchy and fragile skin
  • Musculoskeletal pain
  • Scoliosis
  • Poor muscle tone
  • Mitral valve prolapse
  • Arterial/intestinal/uterine rupture
People with EDS and joint hypermobility, and connective tissue extensibility EDS are more likely to suffer from pelvic floor dysfunction, such as prolapse and pelvic pain.

Approximately 55 per cent of women with EDS experience Dyspareunia - pain with sex. Unfortunately though, this symptom is often left untreated, as those with EDS can have more extensive symptoms affecting other parts of the body. Embarassment over perceived stigma also prevents many women from seeking help. 

What many sufferers don’t know, is that physiotherapy can help with many of these secondary symptoms, such as Dyspareunia.

“A Pelvic Floor Physiotherapist is able to help treat muscular dysfunction caused as a result of EDS.

“The most common symptom I have seen in clinic is Dyspareunia.”

But according to Ms Fitt, not enough women are seeking help, particularly when it comes to painful sex and other pelvic floor conditions.

“There is definitely stigma with regards to pelvic floor conditions and sexual pain,” she says.

“This could be a contributing factor as to why women do not raise concerns of sexual pain with health care providers when treating EDS symptoms."

As a result, EDS itself, is not widely understood. 

“I, as a health professional, had never heard of EDS until working in women’s health.

“The condition isn’t spoken about often in the community and I believe we need more awareness to help women seek early diagnosis and treatment.

“I have had patients before that are aware of EDS and have some symptoms, but have never followed it up with their GP.

“This amazes me because it is a condition that needs to be treated. Those with mild EDS may not have symptoms that are impacting quality of life and therefore can potentially delay diagnosis.”

Those seeking physiotherapy treatment for EDS symptoms should be mindful of the type of physiotherapist they engage, as each have different areas of specalisation.

General physiotherapy aims to treat chronic pain, through exercise to improve joint stability, muscle strengthening and toning; whereas Pelvic Floor Physiotherapy can help to address secondary symptoms of EDS,  including pain with sex, pelvic pain, prolapse symptoms, bladder leakage, and constipation.

“Physiotherapists that work with chronic conditions and have knowledge about EDS are best suited to treating those with EDS,” says Ms Fitt.

While there isn’t any specific training for this per se, most physiotherapists who see patients with  EDS will do professional development in this area.

In terms of Pelvic Floor Physiotherapy, a treating physiotherapist needs to have additional qualification in pelvic floor physiotherapy such as a Post Graduate Certificate.

According to Ms Fitt, the stigma associated with many chronic conditions means overall awareness in the community is low, and this leads to more people suffering in silence.

“We should be talking about chronic conditions more in general to improve the general population’s awareness,” she says.

A more widespread discussion about chronic illness would lead to increased awareness and reduced stigma, which would in turn encourage more people to seek help. 

“Seeking treatment will lead to Improved quality of life, as we can help with symptom management and prevention.”

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Nicole Madigan

Nicole Madigan is a widely published journalist with more than 15 years experience in the media and communications industries.

Specialising in health, business, property and finance, Nicole writes regularly for numerous high-profile newspapers, magazines and online publications.

Before moving into freelance writing almost a decade ago, Nicole was an on-air reporter with Channel Nine and a newspaper journalist with News Limited.

Nicole is also the Director of content and communications agency Stella Communications (www.stellacomms.com) and a children's author.