Green People & EDS
Alexandra, the daughter of Green People founder Charlotte Vøhtz, is one of thousands of people to suffer from the symptoms of Ehlers Danlos Syndrome (EDS)
Green People is supporting Ehlers Danlos Support UK in its efforts to raise awareness and reduce diagnosis times for this range of conditions. Read on to learn about EDS and the symptoms that it can cause.
What is EDS?
The Ehlers Danlos Syndromes are a group of inherited connective tissue disorders which occur due to a mutation in the gene. As connective tissue is in around 80% of our bodies, this means that a connective tissue disorder can affect almost any part of the body.
There are 13 different types of Ehlers Danlos Syndrome (EDS) including hypermobile EDS, classical EDS and vascular EDS. Each type has their own specific set of symptoms but the general characteristics of someone with EDS include having joint hypermobility, skin hyperextensibility and tissue fragility.
It can take as long as 10-15 years for people to be diagnosed, as EDS symptoms are so varied and can often portray other medical conditions (such as IBS for those with digestive complaints). During this time, symptoms and medical complaints can often become worse and patients are not always believed which can lead to the worsening of mental wellbeing and overall health, as some in the medical profession have not heard of Ehlers Danlos Syndrome.
Hypermobile Ehlers Danlos Syndrome
Hypermobile EDS (hEDS) is thought to be the most common type of the syndromes. Whilst it presents with similar characteristics of the other types of EDS, there are individual symptoms that affect those with hEDS in particular. However, these symptoms are incredibly extensive and extremely varied; it is understood as a multi-system disorder.
Hypermobile Ehlers Danlos Syndrome symptoms include:
- Joint hypermobility (causing partial and full dislocations, along with joint pain)
- Digestive complaints (constipation, acid reflux, bloating, nausea, food intolerances, stomach pain)
- Dental problems (bleeding and receding gums)
- Weakness of the muscles and organ walls (such as in the pelvic floor) that can lead to prolapses
- Fatigue (extreme tiredness)
- Easy bruising
- Stretchy skin
- Delayed wound healing
It’s important to remember that not everyone with hEDS will have all symptoms as different people are affected in different ways.
Classical Ehlers Danlos Syndrome
Classical EDS (cEDS) is less common than hEDS, although there is no evidence to show how common it is. This type of EDS affects the skin a lot more than the others, despite a lot of types presenting with stretchy skin.
Classical Ehlers Danlos Syndrome symptoms include:
- Very fragile skin, prone to small tears (especially around the forehead, knees, shins and elbow areas)
- Significant bruising
- Widened, sunken scars, due to the easy tearing of the skin
- Smooth skin with an almost velvet-like feel
- Raised, thick layers of skin
- Swelling after exposure to cold, with the skin being red and painful (known as chilblains)
- Small painful lumps under the skin due to herniations of the fatty tissue underneath
- Joint hypermobility
- Muscle weakness and tissue fragility in the internal organs which can cause hernias
Vascular Ehlers Danlos Syndrome
Vascular EDS (vEDS) affects the blood vessels and internal organs and is thought to be the most serious. This is because this particular gene mutation affects an important protein that causes the weakening of vessel walls and hollow organs, such as the heart. It is a rare condition, affecting between 1 in 50,000 and 1 in 200,000 people.
Vascular Ehlers Danlos Syndrome symptoms include:
- Varicose veins which appeared at a particularly young age
- Very visible veins
- Easy bruising
- Delayed wound healing
- Fragile blood vessels
- Particular facial features
Raising awareness of EDS
The Ehlers Danlos Syndromes pose many challenges for people of all ages. One of the greatest challenges, especially at the beginning, is to be able to receive the diagnosis and the support that is needed.
Even though Ehlers Danlos Syndrome symptoms are incredibly varied due to the different types and the different ways in which they affect people, the time it takes to receive that diagnosis is too long.
The Ehlers Danlos Support UK charity has a vision to reduce the time to diagnosis of EDS from 10 years to 10 months.
You can read more about this charity at https://www.ehlers-danlos.org/
This post was written by Charlotte Twinley.
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