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.
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