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Ehlers-Danlos Syndrome-Hypermobility type – Relieving the discomfort of sitting

The search for the required level of support, adaptability and comfort.

William Meekings and Ergochair Ltd Bristol

Correspondence: Tel: 01454 329210   Email: hello@ergochair.co.uk

Ehlers-Danlos syndrome (EDS) is a mainly inherited condition that affects the connective tissues in the body.

EDS is caused by various defects in the synthesis of collagen. It is known to affect men and women of all racial and ethnic backgrounds. There are six distinct types of EDS currently identified. All share joint laxity, soft skin, easy bruising, and some systemic manifestations.

Specifically in Hypermobility Type EDS, joint hypermobility is the dominant clinical manifestation, particularly affecting the large joints. (elbows, knees) and small joints (fingers, toes). Recurring joint subluxations and dislocations are common occurrences. Certain joints, such as the shoulder, patella and temporomandibular joint can dislocate frequently.

The skin involvement (smooth velvety skin with or without hyperextensibility) as well as bruising tendencies in the Hypermobility Type are present but quite variable in severity.

Chronic pain is a well-established and cardinal manifestation of Hypermobility EDS and it is common for pain to be out of proportion to physical and radiological findings. The origin of the pain is not clearly understood, but some of the likely causes include muscle spasm (tender points are sometimes present) and degenerative arthritis; neuropathic pain is also common.

(Source: The Ehlers-Danlos Society)

William Meekings, a student from Chilworth, Surrey, is an EDS sufferer who has spent many years searching for a way to relieve the chronic pain of sitting for hours at a time whilst working. Recently his world changed for the better.

“When I was fifteen, I was involved in a car accident and sustained a whiplash injury from which I could not fully recover. It took seven years for doctors to discover I had an underlying condition called Ehlers-Danlos Syndrome-Hypermobility type.

This is a rare hereditary connective tissue disorder, which can present in extremely diverse ways in different patients. It is principally characterized by hypermobile, often painful and unstable, joints; skin which may scar easily and be slow to heal; chronic pain and fatigue. There are often also symptoms of autonomic nervous system dysfunction affecting the cardiovascular system and gastrointestinal tract.

The most distressing symptom of the condition in my case is chronic pain, mainly affecting my head, neck and pelvis.

For years I have struggled to get comfortable when sitting down, resorting to piling cushions behind my chair against the wall to support my head and cutting up foam aerobics mats to form custom made seats to sit on. I have had times when my feet and ankles would ache as, being so sensitive to anything on which I sat, I was forced to stand for hours at a time. I would be constantly moving and shifting about when at my desk to try and relieve the discomfort of sitting.

I searched for a suitable seat but it was hard to find anything which provided the required level of support, adaptability and comfort, especially sufficient head support.

Eventually, I came across the Ergochair website and contacted Nick Arnold regarding my situation. From the first email, Nick proved himself to be a very empathetic and compassionate person to talk to. He had a great wealth of experience in dealing with people in pain and listened carefully to my history and specific requirements. He wanted to meet in person so that the perfect combination of cushioning and support could be individually tailored to meet my needs. Although Nick provided much-needed expert advice, he was also very respectful and encouraging of feedback.

He recommended the Adapt 600 chair, with the facility of the V-track headrest as an excellent support for my neck. Nick recommended the seat have a double layer of memory foam and a swivel lock. He took careful measurements to ensure the arm rests, back rest width, seat position and height of headrest were all exactly fitted to my body dimensions. Nick was exceptionally patient, taking time to make small but significant adjustments to obtain the best possible outcome. He took great care to show me how to fine tune every aspect of the custom made chair when it arrived, using the simple yet comprehensive controls.

The chair is eminently adaptable, every aspect able to be adjusted and fitted to perfectly support my body for different activities, from sitting upright at my desk to resting right back using the tilt spring function. It has made a great difference to my daily life, providing a comfortable place where I can now rest or actively work at my desk ,with the required levels of support to minimize pain. I do a great deal of physiotherapy exercises and the chair contributes to the effectiveness of these by enabling me to rest without strain between episodes of activity.

I am delighted with the quality of materials and the aesthetic design of the chair. Having had the chair now for nearly nine months, the foam in the seat continues to provide extremely comfortable support, rather than beginning to compact down as other cushions have done over time. The V-track head rest is designed to cradle the head at whichever angle and height feels most comfortable. It is soft and cushioned, so puts very little pressure on my sensitive scalp and the ability to bend in the side wings to support my head is very good. The back rest straps, which can be tightened or loosened as required, and the inbuilt air cells providing variable lumbar support, are perfect for my hypermobile spine. The adjustability of the arm rests means they can be altered to match the height of my desk, which is very comfortable when using a computer. In spite of the superior levels of comfort and functionality it provides, the chair is very understated in design and looks much like a normal desk chair, which is just what I had been looking for.

I cannot speak highly enough of Nick or the product he has provided for me. “

William Meekings 2016

Support is imperative in achieving the highest levels of comfort needed for sufferers of EDS and only fully customizable seating will allow this. The specification for the headrest alone should include; infinite lockable articulation, dual pivot-point action, alternative pad shape and size options, telescopic height adjustment and adjustable wings for lateral articulation. All this should be easily and quickly adjustable to accommodate changing needs.

We are delighted that we were able to work with William, providing a unique solution that has changed his working environment and his daily life.

 

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