Well it’s a been a while since I’ve updated you all on the world of EB but I’m pleased to say that there has been a long awaited and much needed development.
You may be surprised to learn that because of the rarity of EB, there really aren’t any nurses who are trained in, let alone even heard of EB. Therefore up until now children (and adults) with EB have had to rely solely on their parents/families to do the gruelling daily baths and dressing changes. Well now for the first time ever and with thanks to a wonderful charity called The Little Heroes Foundation, an In-Home EB Nurse Program is being piloted giving much needed care and respite to EB families across Australia.
Here is a little on how the program is to work: (Taken from http://debra.org.au website)
How does the LittleHeroesCare In-Home EB Nurse Pilot Program help DEBRA members?
Due to the rarity of EB (which, based on worldwide figures, is only seen in 1 child for every 17,000 born) many nurses have not come across the disease or received training in the best ways to care for children living with EB.
The LittleHeroesCare pilot In-Home EB Nurse Program is the first of its kind in Australia, funding specialised training for carefully chosen nurses and employing them to work on a regular, ongoing basis with children who are living with EB. Trusted relationships are built between the child, their family, and the allocated nurses and each nurse understands the unique features of their patient’s condition, and how to best minimise the pain and trauma associated with their dressing changes.
Through the pilot program, children living with EB are visited in their own homes, by their carefully chosen nurses, for up to three hours 2-3 times per week to assist with medicated baths and dressing changes. Not only does this provide parents with much needed respite, but if gives them the peace of mind that their child’s wounds are being regularly monitored by trained nurses for early signs of aggressive squamous cell carcinoma.
Families involved in the pilot program have reported improved quality of life with a greater balance of family life versus managing their child’s medical needs. Another invaluable result of the pilot program is seeing parents able to return to being much needed ‘mums and dads’ and that all important safe-haven for their child, as the In-Home EB Nurses take over the unavoidably painful and traumatic medical treatments.
I’ve had my nurse for about 5 weeks now. He is a male nurse and he comes for 4 hours once a week on alternate Saturdays and Sundays. He gives me a full dressing change (arms, legs and torso) which gives my parents 4 hours to go out and one whole day a week of not having to do my dressings.
Not only does this program give my parents a break but it is also a big step for me because it is the first time in my 26 years that I have let anyone other than my family (except Lesley) do my bandages. It’s only a small step but it could mean a little more independence in the future. Now if only we could find someone willing to learn how to hook and un-hook me from the dialysis machine…..or better yet a transplant?
If you would like to donate to either Little Heroes Foundation or Debra Australia please follow the links below!2 Comments