How do we help people with epidermolysis bullosa?

We deliver In-House medical care, through which we provide nursing services according to the patient’s needs, where the patient discusses with the doctor and the nurse concerned about the appropriate plan contains a group of services that include dressing wounds, organising and giving medications, especially intravenous (IV)-injections, if necessary, management of the patient’s general health Hygiene and pain management.

We provide wound care and wound dressing for infected, non-healing wounds. This service is provided for patients based on several factors such as ongoing multidisciplinary assessment, clinical decision-making, medical intervention, and documentation, to facilitate optimal wound healing. A comprehensive care plan for wound care & pain management should be provided based on case-by-case protocol.

This service is available to newborns. Parents can benefit from this service 20 days after the birth of the child and after the diagnosis of the disease. This service includes a free care package with a wide range of wound care products, age-appropriate practical items, and educational information.

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How does this work?

we send a specialised team to hold an awareness session about the disease for parents, what is EB? the symptoms and complications of EB, and how to care for a child with EB and deal with the child’s body. What to do with wounds and blisters that appear or will appear on the baby’s body person.

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• More than one session can be scheduled based on the need.

Clinical Nutrition counseling provides personalised Nutri-plan to people with Epidermolysis Bullosa who are at nutritional risk because of their health condition or nutritional history, dietary intake, chronic illness, or medication use and preventing, and managing chronic conditions resulting from constipation.

Psychosocial support is especially important for people living with epidermolysis bullosa (EB) because the condition can have significant physical, emotional, and social impacts. EB is a chronic and painful skin disorder that often leads to frequent wounds, scarring, and disability,

which can affect a person’s quality of life and overall well-being, it also

plays a vital role in addressing the multifaceted challenges faced by people with EB, helping them lead fulfilling, healthier lives despite the physical and emotional hurdles of the condition.

EB Patient Care Kit is issued based on a comprehensive assessment of the patient’s medical condition, and the disbursement of this kit is to be determined based on the necessity of the need. The kit consists of a set of topical ointments and basic medical supplies necessary for every patient.

Currently, this kit is dispatched for a very limited number of cases.

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•  To obtain this service, please submit your request here