Across the spectrum of EDS types, symptoms and pain associated will differ. For instance, those with vEDS may feel sudden onset pain that is sharp or feels like a tearing wherever an artery or organ has become affected. At the same time, those with cvEDS may experience similar pains or different ones, based on the event that is occurring to them. For example, if they are experiencing a mitral valve prolapse, they may have a racing or irregular heartbeat, feel dizzy or lightheaded, and have difficulty breathing.

Those with hEDS generally experience chronic pain that can affect any and all parts of the body, including occurring as a general overall body pain. When this pain flares, it can be severe and disabling.

This depends very much on the type of EDS you have. vEDS is the most serious form because of the risk of sudden organ rupture and dissection, and previously the condition was often diagnosed only after the loss of a loved one. Now, with the availability of comprehensive and precise genetic testing, the diagnosis of vEDS can be made early and appropriate prevention can help reduce the chances of these life-threatening complications. There are individuals with vEDS who live well into retirement, and early diagnosis is vital in minimising the risk of sudden death. As cvEDS is significantly less common, data to predict an expected lifespan is lacking, but it seems to be a less severe condition compared to vEDS. 

Because hEDS can affect the heart less severely than vEDS or cVEDs, the average life expectancy is on par with a person without the disease. Quality of life, however, may be affected if treatment and management of the disease is not started and maintained.

It’s important to remember that ultimately your lifespan is affected by the management of the condition, including early diagnosis of potential issues and minimising risk, like avoiding trauma to the body to reduce the likelihood of ruptures and maintaining a low blood pressure. Remember: you can take action to minimise the long-term effects of your EDS in order to help prolong your life and improve your quality of life.

While both Marfan's syndrome (also known as Marfan syndrome) and Ehlers-Danlos syndrome are genetically inherited connective tissue disorders that can affect the heart, they are not the same condition. Marfan syndrome is a result of an abnormality in the FBN1 gene, whereas vEDS and cvEDS are caused by abnormalities with the COL1A2 gene, and COL1A2 and COL3A1 genes respectively. As a result, they present differently to a specialist with expertise in the area. While heart issues like aortic ruptures and valve malformations can be signs of both conditions, other Marfan’s syndrome symptoms or EDS signs can help narrow down the diagnosis. Similarly, even though there is no identified gene mutation for hEDS, there are symptoms that can distinguish it from Marfan syndrome.

EDS is a lifelong illness with no cure. However, through specialised care, much can be done to improve symptoms and quality of life. People with EDS require tailored care by health professionals who are familiar with their particular type of EDS so that their health is optimised.

EDS is named after two of the doctors who helped identify the syndrome. The first is Edvard Lauriz Ehlers — a Danish dermatologist who noted a patient with hyperextensible skin and a tendency to bruise easily — and the other is Henri-Alexandre Danlos — a French physician who posited a patient’s condition was a result of trauma, with skin lesions being vascular and inflammatory in nature. Naming the collective syndrome after these two doctors highlights their contribution to documenting and detailing the condition.