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Duchenne awareness still low in Sabah
Published on: Sunday, July 16, 2017

Kota Kinabalu: The general awareness level on Duchenne muscular dystrophy is still low in the State, said paediatric neurologist Dr Heng Hock Sin.

Heng, who is attached to the Sabah Women and Children's Hospital here, said this is due to the rarity of Duchenne.

"Since it is a rare condition, not many people are aware about it…even when the children are first diagnosed with it, most parents have never heard about it," he said during the 7th annual Coalition Duchenne expedition flagging-off, here, Saturday.

He disclosed that he does not have the exact figure of Duchenne patients in Sabah, but currently "we are treating 13 patients who are not only from Kota Kinabalu but also other districts like Kota Marudu, Kota Belud and Kuala Penyu."

Heng also collaborates with Coalition Duchenne in Duchenne without Borders, a new initiative under the non-profit organisation.

The initiative supports families and boys with Duchenne all over the world and in Sabah, it has reached out to 13 patients in rural communities and provided them with Ambu bags.

Coalition Duchenne has also provided information about Duchenne to doctors and families in these areas.

An Ambu (Artificial Manual Breathing Unit or manual resuscitator) is a simple device that has the potential to improve pulmonary function in Duchenne patients.

And one of the recipients of the device in Sabah is Azmi George, a 19-year-old from Tamparuli.

Azmi's father, George Tangilan, said his son was diagnosed with Duchenne when he was nine and he had to drop out of school a year after that as it affected his movement.

"Initially, we did not know what sickness is he suffering from but after we met the doctors and a thorough check-up was done, we were told he has Duchenne," he said.

He added that Azmi is the third of six children and the only son who suffered from the rare condition.

According to him, Coalition Duchenne has helped his family a lot, especially in finding sponsors to fund his son's care.

Since its initiation in 2010, Coalition Duchenne founder Catherine Jayasuria said the movement has created an impact across the globe.

The coalition has also committed to channel all the money raised to fund Duchenne research.

"And currently the organisation is funding six researches like the preclinical study using cardiac-derived stem cells in Duchenne, refining the stem cell approach using Exosome and evaluating a natural hormone called Relaxin for use in Duchenne.

"Our annual climbs have funded some ground-breaking research into cardiac stem cells that are now in trials to Duchenne hearts. These treatments will be available to all boys with Duchenne," she said.

She added that the annual Mount Kinabalu climb has inspired other climbs in other countries for Coalition Duchenne such as the Swiss Alps climb.

"We also had a group who climbed Mount Whitney in California last year and also a walk on the famous Pacific Crest Trail."

A total of 14 climbers are taking part in the seventh edition of the Mount Kinabalu expedition, who share the same mission which is to increase the global awareness on Duchenne muscular dystrophy.

The flagging-off was done by Sabah Parks Board of Trustees Chairman Datuk Seri Tengku Dr Zainal Adlin Tengku Mahamood. - Ricardo Unto

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