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09.02.2017

EB Without Borders: Building bridges, breaking barriers

September 23rd, 2016. Zagreb.
As part of the EB Without Borders presentation, I detail DEBRA Singapore’s (DS) outreach work in Cambodia, India, etc. and conclude that we are not planning to engage with Pakistan yet given the socio-political challenges associated with the country. The Fates must have been listening.

September 29th, 2016. Singapore, hospital, cafeteria.
In the middle of a debrief meeting with the Debra Exco, Zeehan’s (treasurer, DS and a trained nurse) phone rings. I recognize the number as originating in - Pakistan! Since Zee is clearly struggling to communicate in English with the caller, I take over and ask in Urdu how we may help. The distraught father of an RDEB child rushes into an explanation and plea for help, relieved that I understand. He goes on: "You’re the first person who knows what EB is and what my child is going through. I am so tired of explaining, tired of not being understood. So tired."

Once again, I feel like an alien on Earth – a castaway who periodically comes across butterflies who remain invisible to others but their kind. I explain to Tassadaq, the father of 7 month old Ahmad, wants to know what dressings and emollients he should buy and from where. There is nothing available in Pakistan he says. Could we send them if he were to pay? I suggest getting some of the products from India but he knows no one there. With a bitter laugh, he reminds me that now no one will help even if they could. India has just launched ‘surgical strikes’ against Pakistan and cross-border relations, never robust, are even more impossible now. I assure Tassadaq that battles are between nations, and relationships between people. He sounds unconvinced.

September 30th, 2016
Tassadaq sends photographs of Ahmad’s blistered body. It does hurt to watch. I send the images to Francis in Chile requesting remote diagnosis and of course, he responds. Probably RDEB.

October 1st, 2016
Zeehan starts communicating in English via Whatsapp with Tassadaq. We send images of dressings such as Mepilex and Polymem and ask if they are available. They aren’t.

October 2nd, 2016
I find out that a close friend is hosting a visitor from Lahore, Pakistan who is going back in a few hours. Frantic phone calls later, Zeehan is on her way with a small stash of dressings to the airport where she makes it just in the nick of time.

October 5th, 2016 
The dressings are collected and long distance wound care begins. We ask for videos of daily rituals. Zeehan explains in English. I translate into Urdu. Phone calls, instructions, demonstrations. But then the dressings run out and nothing is available in Pakistan. The parents are frantic and promise to pay if we can send more. We appeal to Polymem and in a few days, boxes of generosity arrive.

October 13th, 2016
Setback. Fedex refuses to take medical supplies. I approach the office of the High Commissioner of Pakistan in Singapore appealing that the diplomatic pouch be used to send dressings. Promises are made – but remain unfulfilled.

October 20th, 2016 
We take a chance and send Polymem ‘foam rolls’ via Fedex. Naively, we label their cost accurately but highlight they are a ‘donation’. Customs in Pakistan don’t buy ‘charity’ and demand duty be paid for the release of goods. Daily exchanges follow but the dressings are stuck at customs in Lahore.

October 26th, 2016.
I wake up and check my phone. A message from Tassadaq: "Ma’m my baby is expired".

End of a chapter. Beginning of a story. Watch this space.

Ritu Jain, President DEBRA Singapore and DEBRA International EB Without Borders Ambassador