DEBRA International, through its EB Without Borders programme, was delighted to support the DEBRA Pakistan team in holding their first EB Awareness Week events and the publication of an EB care guidebook.
In October 2020, the first EB Awareness Week in Pakistan’s history was organised as our community came together to highlight the importance of EB awareness, in a country where awareness and knowledge about this condition is greatly lacking.
On 26th October 2020, our first EB awareness event transpired at Jinnah Postgraduate auditorium, Karachi at 10am. The event commenced with the director of DEBRA Pakistan, Faiza Ambreen explaining what DEBRA Pakistan is, and how it endeavours to address the concerns of countless families living with this painful condition who have been surviving with, up until now, no support whatsoever.
The first event took place on 26th October 2020 in Karachi with 130 people in attendance
During the first half of the event, various talks and presentations were provided by a multidisciplinary team of medical professionals about disease management. In-depth information was provided to families ranging from wound, nutritional, dental/oral care as well as information about genetic testing due to the prevalence of consanguineous marriages. With the latter being a sensitive issue in the community, we have very gently opened a dialogue about the genetic risks existing in such marriages and have explained the right of choice that couples have when planning for more children, after a child has been born with EB, but not confined to just those have inter-married. A heartening shield distribution ceremony was also conferred to honour our chief guests and participants. Following this, an incredibly helpful Q&A session commenced, which provided parents a rare opportunity to directly communicate with multiple professionals in one safe setting. We have observed that this increased their confidence and enhanced their ability to understand the complexities of this multi-faceted condition.
The second event took place on 29th October 2020 in Islamabad with 71 attendees
In Karachi, 130 people including clinicians and families of those affected by EB attended whilst there were 71 attendees in Islamabad. It had taken our team over a month to prepare our EB guidebook and over another two months to complete and have it approved by our clinicians. Through these events, DEBRA Pakistan endeavoured to engage the attention of medical professionals and the wider community to spread and raise awareness about EB in Pakistan. The feedback that we have received from these events has proven to be very promising and this success has garnered much interest from government authorities and medical experts. This has also extended internationally, as a wound care specialist, Gulnaz Tariq, who works with the International Inter-professional Wound Care Group (IIWCG) has reached out from the UAE and has generously offered to collaborate with us in future capacity building programmes. What is particularly exciting is that through Gulnaz Tariq, we have now discovered the dressing distributors in Pakistan who directly deal with Mölnlycke Healthcare. This is a beacon of hope for our team at DEBRA Pakistan as we see first-hand the devastation of poor wound care and its catastrophic conclusion - the untimely demise of children from skin infections and severe malnutrition.
Furthermore, DEBRA Pakistan’s first national awareness events have enlisted the interest of the Karachi Down Syndrome Programme (KDSP). Similar to DEBRA Pakistan’s inception, KDSP is a non-profit organisation that a father of a child born with the syndrome had begun five years ago. The various opportunities that networking with such people and their organisations has provided is invaluable and will assist us in gaining further experience and expertise in serving those in Pakistan that have been greatly neglected by both the health authorities and wider public.
A comprehensive EB care guidebook developed by DEBRA Pakistan
This project has helped us to identify EB hotspot areas in Pakistan. Following the events, we are receiving around two patients every week. This was the first interaction with a huge EB audience, especially in Islamabad, around 20 EB family members joined us and this experience has given us even deeper insight into their socioeconomic and healthcare challenges. We have to strive more to bring significant positive changes to cater to our patient's needs.
Through these events, we have found gaps to in the health system for people living with such rare diseases. Our major concern is the training projects for medical professionals to introduce capacity building program. We are grateful to DEBRA International for supporting us in taking this opportunity to spread EB awareness, this has captured massive attention nationwide.
- Faiza Ambreen, Managing Director DEBRA Pakistan
- Sumaiya Choudhry, Chief Development Officer & Head of Creative Media