Ehlers-Danlos Syndrome Q&A

What is EDS?

EDS stands for Ehlers-Danlos Syndrome and is a group of disorders that affect connective tissue and is usually characterised by hypermobility. EDS 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. Connective tissue is made up of fibrous material, cells and collagen. Those with EDS have a defect in the protein, collagen, effecting production.

What causes EDS?

EBS is a inherited condition. You would develop the particular subtype of EDS that runs in your family genes.

How common is EDS?

According to the Ehlers Danlos society EDS effects 1 in 2,500 – 1 in 5,000 men and women.

What symptoms does EDS cause?

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

 Will women get all or some of these symptoms?

Women will only experience symptoms relating to their EDS subtype. All subtypes include symptoms of joint hypermobility.

 Is EDS often misdiagnosed?

I believe if individuals present to Doctors with these symptoms, particularly if there is a family history, there shouldn’t be a misdiagnosis and testing on joint hypermobility and generic testing should be ordered by an appropriate specialist.

Is there stigma around EDS?

There is definitely stigma in regards to Pelvic Floor conditions and sexual pain. 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.

 Are many women aware of EDS?

I myself, 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.

How can physio help women with EDS?

In regards to Pelvic floor those 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. A Pelvic Floor Physiotherapist is able to help treat muscular dysfunction caused as a result. The most common symptom I have seen in clinic is Dyspareunia, pain with sex. Approx 55% of women with EDS experience pain with sex, however this is often not addressed as those with EDS can have more extensive symptoms affecting other parts of the body.

Pelvic Floor Physiotherapy can help to address secondary symptoms of EDS including pain with sex, pelvic pain, prolapse symptoms, bladder leakage, and constipation.

General physiotherapy aims to treat chronic pain, exercise to improve joint stability, muscle strengthening and toning.

Do women often keep quiet about these symptoms? 

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.

Are all physios able to help or do they need to be specially trained?

Physiotherapists that work with chronic conditions and have knowledge about EDS are best suited to treatment those with EDS. There isn’t any specific training for this but most physiotherapists who see patients will 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.

Is more awareness required?

YES!!!! We should be talking about chronic conditions more in general to improve the general populations awareness.

What can be achieved overall through physio? 

Improved quality of life as we can help with symptom management and prevention!!

If you would like to learn more follow Rachel on instagram @physioforwomen_ or visit The Eslers-Danlos Society website