It's World Epidermolysis Bullosa Day!

It's Word Epidermolysis Bullosa Week and to celebrate this, we've put together a video montage of the efforts that has been put in so far in caring for these butterfly children.

Again, EB children needs lifelong support, be it physical or psychologically. We welcome you to join us in caring for these children.

We are featured in The Star!!

We are so grateful to have The Star do a coverage on Epidermolysis Bullosa. And who better to talk about this other than Dr Sabeera Begum, Consultant Pediatric Dermatologist, Institute of Paediatrics, Hospital Kuala Lumpur. Dr Sabeera has cared for numerous EB patients and she is very familiar with the issues and challenges these patients go through. This definitely helps in spreading awareness amongst the public regarding the existence of this rare, but potentially debilitating condition.

Read all about what Dr Sabeera Begum have to say about Epidermolysis Bullosa (EB) here:

The Star coverage - A very rare disease

Also, one family talks about what is it like taking care of an EB child

Her Butterfly Child

EB Patients and Familes Support

EB is a lifelong disease with no definitive treatment or cure at present, despite intensive ongoing research. The EB spectrum can vary from a mild, disabling form, to more severe forms with widespread painful blisters over the entire body, including the eyes, mouth and internal linings.

In spite of modern medical care, death in infancy still occurs in some forms of EB. The normal daily activities of childhood, from learning to walk, learning to ride a bicycle and playground games all pose high risk to children with EB, as bumps and knocks can result irreversible, extensive skin damage.

With that, it is obvious that caring for an EB patient is never easy. Hence, if you are a patient suffering from EB, or a caretaker to an EB patient and would like to seek help from us, we're at all ears! Simply fill up this form (EB Family Support Application Form) and email to us at debramalaysia@gmail.com. We promise we will support you to the best that we can!

We support in the following ways:

• Medical supplies
• Aids and equipment
• Quality of life
• Support services
• Transition to independent living
• Other

Alternatively, if you would like to be a part of DEBRA Malaysia and reach out to more EB patients, you are welcomed to join us. Simply fill up this form (DEBRA Malaysia Membership Form) and email to us at debramalaysia@gmail.com. 

We welcome all parties, whether you are a medical practitioner, patient of EB, caretaker of an EB patient or simply anyone who is interested in helping us provide better care for EB patients.

Upcoming Events

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)

Epidermolysis Bullosa

Imagine if....

The touch of clothing tears off your skin

Your feet blister under your own weight

A tiny of hair in your eye makes it swell and blister

Your throat rips and scars when you eat normal food

It takes 3hours of everyday of your life to treat and dress your wounds

About Epidermolysis Bullosa (EB)

Epidermolysis bullosa (EB) is a rare genetic skin disorder which causes the skin to blister and shear even with the slightest of touch. Sometimes the skin even blisters spontaneously. The condition affects over 500,000 individuals worldwide. Every 1 in 17,000 babies born will be affected by EB. Children with EB are termed "butterfly children" because their skin is as fragile as that of a butterfly's wings.

There is estimated to be 500 families with EB in Malaysia. Out of this number, 5% suffer from a moderate to severe form of the disease. This particular group desperately needs continuous medical and psychological support.

If you wish to get in touch with us for future activities, getting help for EB patients or even making a donation, please do not hesitate to contact us.

Main office
DEBRA Malaysia
Persatuan Kebajikan Epidermolysis Malaysia
D-5-1, 7th Floor, Block D, Menara Uncang Emas,
Jalan Loke Yew,
55200 Kuala Lumpur,
Malaysia

Telephone number: +6012-3913328

Email: debramalaysia@gmail.com