Sia, the singer behind hits like Chandelier And Cheap thrills shared her experience with Ehlers-Danlos syndrome in 2019 on social media.
Ehlers-Danlos is a group of conditions that affect connective tissue (those with the condition may have over-extended joints, skin that stretches excessively, and fragile tissues).
“I wanted to say to those of you who are suffering from pain, physical or emotional, I love you, keep going,” she wrote in the post.
“I just wanted to say to those of you who are suffering from pain, physical or emotional: I love you, keep going,” Sia concluded.
Her announcement was praised by fans and fellow celebrities such as Jameela Jamil, who also has the condition, for shedding light on an often misunderstood, often ‘invisible’ disease.
Ehlers-Danlos syndrome (EDS) is a group of hereditary disorders that affect the body’s connective tissues, mainly collagen.
Collagen gives strength and elasticity to structures such as the skin, joints, blood vessels and organs. Genetic mutations weaken collagen, leading to fragile tissues, joint instability and a range of systemic symptoms. There are several subtypes of EDS, with hypermobile EDS (hEDS) being the most common.
Types of Ehlers-Danlos Syndrome
Some of the major sub-types are:
- Hypermobile EDS (hEDS): mainly affects the joints and causes chronic pain
- Classic EDS: Characterized by hyperextensibility of the skin and abnormal scarring
- Vascular EDS: A rare but serious form involving vulnerable blood vessels and organs
Symptoms of Ehlers-Danlos syndrome
Symptoms vary depending on the subtype, but the most common features are:
1. Joint hypermobility
- Unusually flexible joints (double joints)
- Frequent joint dislocations
- Chronic joint pain
2. Skin abnormalities
- Soft, velvety skin
- Stretchy (hyper-stretchable) skin
- Easy bruising
- Slow wound healing and abnormal scarring
3. Chronic pain and fatigue
4. Fragile tissues
- Blood vessels that bruise or tear easily (in certain subtypes)
- Organ fragility in severe cases
5. Additional symptoms
- Gastrointestinal problems (bloating, constipation)
- Dizziness or fainting due to autonomic dysfunction
- Tooth and gum problems
Diagnosis
Diagnosing EDS can be challenging, especially for hypermobile EDS, for which no definitive genetic test yet exists. The diagnosis is usually based on:
- Clinical examination of joint flexibility (Beighton score)
- Medical and family history
- Genetic testing for certain subtypes
Early diagnosis is important to prevent complications and improve quality of life.
Management and treatment
There is currently no cure for EDS. Treatment focuses on controlling symptoms and preventing injury.
1. Physiotherapy
- Strengthening muscles to support joints
- Improving stability and reducing dislocations
2. Pain relief
- Over-the-counter or prescription pain relief
- Lifestyle adjustments to minimize strain
3. Joint protection
- Reinforcement or support for unstable joints
- Avoiding high-impact activities
4. Cardiovascular monitoring
Particularly important for vascular EDS, where regular imaging may be needed to monitor the blood vessels.
5. Lifestyle adjustments
- Gentle exercises such as swimming or pilates
- Maintain a healthy weight
- Avoiding activities that increase the risk of injury
EDS is a lifelong condition, but with the right treatment, many people can live active lives like Sia. Education, support networks and personalized care plans are essential.
