The Epidermolysis Bullosa (EB) Workshop
DATE: 14th and 15th September 2017
VENUE: Auditorium Paediatric, Hospital Kuala Lumpur
WHO SHOULD ATTEND:
- Medical practitioners
- Patients of EB
- Parents/caretakers of EB patients
- Anyone who is interested in knowing more about EB
OBJECTIVES
1. Awareness of Epidermolysis Bullosa (EB)
EB are often called 'Butterfly Children" because as the analogy goes, their skin is as fragile as the wings of a butterfly. It is a rare genetic disorder with no cure. EB is always painful, often pervasive and debilitating, and is in some cases lethal. Daily wound care, pain management and protective bandaging are the only options available for people with EB.
With this in mind, let us get together from various stock holders to help these unfortunate children to deal with their day to day routines and activities in a pleasant and pain free manner.
2. Learn More
We have arranged a unique programme this year with multidisciplinary team approach where you can learn from the experts like doctors, nurses, dietitian, dentist and of course from patients themselves how to care and manage patients with EB.
3. Get Together
For patients, parents and guardians, it is time to get together to share, teach, learn and support each other in coping with this painful skin disease. We have also prepared plenty of surprises for you and your children on this occasion so don't miss out on this opportunity!
PROGRAMME
14th September 2017
0800-0900 Registration for Nurses
0900-1000 Epidermolysis bullosa in Malaysia
(Dr Leong Kin Fon)
1000-1030 Tea
1030-1100 Diet and Nutrition in Epidermolysis Bullosa
(Miss Lai Jaan Jiar)
1100-1130 Oral care in Epidermolysis Bullosa
(Dr Ganasalingam al Sockalingam)
1130-1200 How to ease pain in EB
(TBA)
1200-1230 Do No Harm
(Dr Sabeera Begum)
1230-1300 Special Non Adhesive Dressings
(Monlycke)
1300-1400 Lunch
1400-1700 Demonstration on Dressing Live Patients
(Kasmini/Afsana)
Baby
Toddler/child
Adult
1700. Adjourn
15th September 2017
0800-0900 Registration for patients/parents
0900-1000 Butterfly children: What is special?
(Dr Wee Ai Leen)
1000-1030 Tea
1030-1100 Role of DEBRA in EB
(Puan Khatijah Abdullah)
1100-1200 Meet the expert
(All speakers with parents/patients)
Q&A
1200-1230 Parents' journey with EB: Sharing the story
1230-1300 What's new? Unique dressing
(Polymen)
1300-1400 Lunch
1400-1700 Get together
Ice cream time for kids
Clown show
Fashion show
Talent show
Sand art
Drawing competition
1700. Adjourn
REGISTRATION FEE
Doctors: RM 100
Nurses: RM50
(Cash, pay on site)
For those interested, please call 03-26155555 EXT 6964/6904 (JT Mini & JT Afsana) OR EXT 6942 (JM Farah)
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