Epidermolysis bullosa dystrophica or EB includes a rare group of genetic diseases involving skin fragility, resulting in blistering of the skin either spontaneously or following minor skin contact, or trauma. The mucous membranes or linings of the cavities of the body that open to the outside, such as the mouth and the surfaces of the eyes, are also sometimes involved.
Symptoms and characteristics:
Epidermolysis bullosa is characterised by fragile skin that forms blisters usually following physical contact like a bump or graze, although can also occur spontaneously. Epidermolysis bullosa can vary in severity from minor blistering through to severe, where constant, massive blistering and scarring occur. In severe forms epidermolysis bullosa can result in:
- breathing or swallowing difficulties
- malnutrition due to feeding difficulties
- nail changes
- scarring of the involved areas which may result in movement difficulties
- skin atrophy and reduced amount of skin, at the site of blisters
- skin cancer
- vision impairment
- death.
Workplace solutions and adjustments:
In the workplace there are various factors that may greatly assist persons with epidermolysis bullosa to better manage their symptoms. These include:
- duties which minimise potential risk of skin damage, with consideration given to equipment options, such as voice recognition software to reduce the need for physical contact with a keyboard
- flexible employment conditions which may include equipment to enable work from home or hospital to accommodate for potentially extensive care, and dressing routines and medical treatment
- access to a private area within the workplace in which dressings or care routines can be undertaken if required at work
- adaptive equipment aimed at maximising abilities and overcoming any barriers within the workplace
- if a walking or mobility aid is required, ensure wheelchair or walking aid accessibility to all areas of the workplace including kitchen and bathroom amenities, workspace and other doorways or emergency exits along with installation of ramps for independent building access.
The Employment Assistance Fund provides financial assistance for work-related modifications, equipment and services to help persons with a disability to get employment and perform their work as independently and productively as possible. To determine eligibility, please refer to the full guidelines:
There are solutions and adjustments for the following job requirements:
References:
DebRA Australia 2011, What is EB?, Debra Australia, Queensland, viewed 27 November 2011,
http://www.debra.org.au/easyweb3/WEBID-532959-ep_code-About%20Us.
Healthline 2005-2011, Epidermolysis bullosa , Health line Networks, Inc., San Francisco, viewed 27 November 2011, http://www.healthline.com/adamcontent/epidermolysis-bullosa.