Living with Ehlers Danlos, being an artist and living my life.

As an artist, the most important thing to me is my ability to create. However, having Ehlers Danlos Syndrome (EDS) can sometimes make that difficult. EDS is a connective tissue disorder that affects the joints, skin, and blood vessels. It can cause chronic pain, fatigue, and joint dislocations.

Living with EDS means that I have to be aware of my body’s limitations and often adjust my creative process accordingly. Some days, I am in too much pain to work for long periods of time, and other days, my hands are too weak to hold a paintbrush. Despite these challenges, I continue to persevere because creating art is my outlet. It is a way for me to express myself and escape the physical limitations of my body.

One of the ways that I like to incorporate my EDS into my art is by working monochromatically: ink works in black and white, referencing the zebra. Zebras are often used as a metaphor for EDS because they are rare and unique, just like the disorder itself. They are also black and white, which represents the contrast between the good and bad days that come with living with EDS.

In my latest black and white ink art piece, I have incorporated the zebra into the design. It is a reminder to myself that even though living with EDS can be challenging, I am strong and unique. My art is a reflection of who I am and the obstacles that I have overcome.

Overall, living with EDS has taught me to be patient with myself and my body. It has also given me a unique perspective on life and the world around me. Through my art, I hope to inspire others to embrace their differences and find beauty in their struggles.

More info on EDS:
Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue.

Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.

Symptoms of Ehlers-Danlos syndromes (EDS)
There are several types of EDS that may share some symptoms.

These include:

an increased range of joint movement (joint hypermobility)
stretchy skin
fragile skin that breaks or bruises easily
EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling.

The different types of EDS are caused by faults in certain genes that make connective tissue weaker.

Depending on the type of EDS, the faulty gene may have been inherited from 1 parent or both parents.

Sometimes the faulty gene is not inherited, but occurs in the person for the first time.

Some of the rare, severe types can be life threatening.

Main types of Ehlers-Danlos syndromes (EDS)
There are 13 types of EDS, most of which are rare.

Hypermobile EDS (hEDS) is the most common type.

Other types of EDS include classical EDS, vascular EDS and kyphoscoliotic EDS.

The EDS Support UK website has more information about the different types of EDS

Hypermobile EDS
People with hEDS may have:

joint hypermobility
loose, unstable joints that dislocate easily
joint pain and clicking joints
extreme tiredness (fatigue)
skin that bruises easily
digestive problems, such as heartburn and constipation
dizziness and an increased heart rate after standing up
problems with internal organs, such as mitral valve problems or organ prolapse
problems with bladder control (urinary incontinence)
Currently, there are no tests to confirm whether someone has hEDS.

The diagnosis is made based on a person's medical history and a physical examination.

Classical EDS
Classical EDS (cEDS) is less common than hypermobile EDS and tends to affect the skin more.

People with cEDS may have:

joint hypermobility
loose, unstable joints that dislocate easily
stretchy skin
fragile skin that can split easily, especially over the forehead, knees, shins and elbows
smooth, velvety skin that bruises easily
wounds that are slow to heal and leave wide scars
hernias and organ prolapse
Vascular EDS
Vascular EDS (vEDS) is a rare type of EDS and is often considered to be the most serious.

It affects the blood vessels and internal organs, which can cause them to split open and lead to life-threatening bleeding.

People with vEDS may have:

skin that bruises very easily
thin skin with visible small blood vessels, particularly on the upper chest and legs
fragile blood vessels that can bulge or tear, resulting in serious internal bleeding
a risk of organ problems, such as the bowel tearing, the womb tearing (in late pregnancy) and partial collapse of the lung
hypermobile fingers and toes, unusual facial features (such as a thin nose and lips, large eyes and small earlobes), varicose veins and delayed wound healing
Kyphoscoliotic EDS
Kyphoscoliotic EDS (kEDS) is rare.

People with kEDS may have:

curvature of the spine – this starts in early childhood and often gets worse in the teenage years
joint hypermobility
loose, unstable joints that dislocate easily
weak muscle tone from childhood (hypotonia) – this may cause a delay in sitting and walking, or difficulty walking if symptoms get worse
fragile eyes that can easily be damaged
soft, velvety skin that is stretchy, bruises easily and scars
Hypermobility spectrum disorder (HSD)
Some people have problems caused by hypermobility, but do not have any of the specific EDS conditions. They may be diagnosed with hypermobility spectrum disorder (HSD), which is treated in the same way as hEDS.