Debra Pakistan / Director's Statement
but in the meantime, my bundle of love had filled my life with such joy, peace and contentment that I never knew had known existed. It was when I visited the dermatologist with Haram, and was informed that my daughter’s damaged nails would never regrow, however, that the familiar and unwelcome ache from her birth returned with utmost force. I remember the words’ Junctional Epidermolysis Bullosa,’ glaring back at me from the prescription as I left the appointment, not knowing what this meant, or what it would entail. The first thing that I did as I returned home was to google these alien words, only to be devastated by what I read. Although I fought to provide my daughter with the best quality of life possible throughout her three short years of life, by conducting extensive personal research and reading, my little girl ultimately succumbed to airway complications from JEB and departed from this life on 9th February 2018.
It is this personal battle with Epidermolysis Bullosa and my daughter’s suffering, which has instilled in me the fortitude and determination to continue the fight against what is often described by medical professionals, as ‘the worst disease you’ve never heard of.’ I had promised Harram in her lifetime that I will do all in my power to minimize the pain of children and adults living with this condition, thus transforming my voluntary work into a passionate purpose, one which I believe that God has chosen for me. As the director of Debra Pakistan, I endeavor to provide high-quality care to those living with E.B. whilst ensuring that patients can soon access state of the art medical and social support systems. With a team of dedicated volunteers, we are committed to establishing Debra Pakistan as the first national platform that gives voice to the needs and problems of the EB community. The extremely difficult experience with my daughter, and recognition of the great gaps in knowledge about the cause, diagnosis, treatment and cure of such a rare disease, has cemented my resolve to help improve the lives of people living with Epidermolysis Bullosa in Pakistan.
Debra Pakistan’s action plan encompasses various crucial aspects of EB awareness. This focuses greatly upon educating parents and medical professionals through liaising with both national and international platforms, approaching government authorities for support, research and development to find sustainable solutions to reoccurring complications associated with EB, and the ultimate aim of finding a cure. We also hope to encourage genetic testing in families with a history of genetic disorders, and to introduce health policy reforms that will address and deliver the much needed care that the EB community in Pakistan so urgently requires and deserves. Whilst we are aware of the tremendous challenges we face in working towards our goals, we are confident that with our combined efforts we shall bring a significant change for sufferers and their families.
I leave you with inspirational words from Abu Bakr R.A:
“Taking pains to remove the pains of others is the true essence of generosity.”
May this journey of ours, where our pain to remove the pains of others succeed and God willing, pave the path towards a painless future.