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Obstructive Sleep Apnoea has been recognised as a common issue disturbing sleep that many with Ehlers-Danlos may come to experience. Obstructive sleep apnoea is disorder impacting breathing during sleep. There are several types of sleep apnoea (central, mixed, RERAs etc) for ease we are just focusing on the two main obstructive types the obstructive apnoea and hypopnoea. As our muscle tone relaxes as we fall to sleep the soft tissue in our upper-airways may become too relaxed and partially or fully obstruct the airway causing a cessation in breathing. If this lasts for at least 10 seconds this is called an apnoea (also spelt apnea). You can also have partial obstruction causing what's known as hypopnoea and they also need to last 10sec but also are required to either have oxygen levels start to drop by 3-4% and/or cause you to wake from sleep. Sleep apnoea is diagnosed by how many respiratory events (apnoea, hypopneoa etc) one has per hour.

Apnoea severity

Normal: 0-5 apnoeas/hypopnoea an hr

Mild: 5-15 apnoeas/hypopnoea and hr

Moderate 15-30 apnoeas/hypopnoea and hr

Severe: 30+ apnoea/hypopnoea an hour (and we do mean plus as some can hit over 100 apnoeas an hour)

Symptoms of OSA can include

  • Fatigue

  • Sleepiness

  • Snoring

  • Morning headaches

  • Concentration issues

  • Weight gain

  • Reflux

  • Problems with HR and BP

  • Anxiety/depression

A sleep study can be organised by your GP to rule out sleep disordered breathing issues. Where possible a lab/hospital based study is preferable. If your only option is a home study get one from a reputable sleep lab; there are many chemists who know nothing about sleep flogging home studies that are no more than screening tests.

Studies have highlighted in connective tissue disorders like Ehlers-Danlos Syndrome and Marfans that there is a higher incidence of obstructive sleep apnoea. This is likely due to the differences in our soft-tissue and anatomy (narrow palate, scoliosis, nasal cartilage abnormalities etc). It is frequently under diagnosed as the typical belief is OSA is seen in overweight older males. OSA doesn't discriminate and can occur regardless of weight, age and sex. Even children with EDS are at risk for OSA and other sleep disorders.

Treatment of OSA and other sleep disorders is important with sleep being the third pillar of health (exercise and diet the other two). It's also been highlighted due to the cardiovascular risk associated with OSA it's important for those with Marfans and Vascular EDS (or anyone with EDS and cardiac issues). Treating OSA may also help with fatigue, brain fog and cognitive issues seen in both OSA and EDS.

There has been recent studies such as this one by Stefanie M Miller et al. Looking at treatment options for EDS patients such as the use of hypoglossal nerve stimulation for a patient who was unable to use CPAP. This study showed this option as effective and safe in this case opening up options for OSA treatment.

Due to the higher prevalence of OSA and other sleep-disordered conditions related to EDS, this often neglected area of health needs to be considered as part of a holistic approach to symptom management. More work is needed to create awareness and treatment options within the patient and health professional areas. OSA is just one part of a large puzzle that is sleep in the EDS patients.

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