2018 news

A special update from our CEO - mending the hearts of people, and a nation

A special update from our CEO

Mending the hearts of people, and a nation

What an incredible week it has been! It started with the publication of landmark research into rheumatic heart disease, a study that we proudly supported and funded.

The government of Timor-Leste has been quick to act on the study’s alarming findings that Timor-Leste has amongst the world’s highest rates of rheumatic heart disease (RHD), and that girls are worst affected, with one in 20 suffering from this treatable, preventable condition.

Along with representatives of the World Health Organisation Timor-Leste, senior government and non-government officials and a large media contingent, yesterday I attended an announcement by the Timor-Leste  Ministério da Saúde (Ministry of Health).

The rapid response from the Timor-Leste government should be commended. In a statement the Director-General for Health Services at the Ministry of Health described the findings as very troubling and said:

 

“There is no time for complacency, we must take action. Today we commit to working with partners including East Timor Hearts Fund to develop an action plan and guidelines for combatting RHD in Timor-Leste.”

 

The swift and decisive action taken by the Timorese government is timely, as global health leaders prepare to meet in Geneva next month at the World Health Assembly. One of the key agenda items will be a resolution for action on rheumatic heart disease. Congratulations to our friends at the Timor-Leste Ministry of Health for yesterday supporting action in their own country, as well as flagging support for a resolution.

Rheumatic heart disease is a preventable, treatable form of cardiovascular disease. According to World Heart Federation it claims 275,000 lives a year and affects more than 32 million people worldwide. Thanks to our prevalence study, we now know that in Timor-Leste this includes one in 28 people, and as many as one in 20 girls.

The meeting in Dili yesterday concluded with a powerful and moving statement by 12-year-old Tanizia. Tanizia has rheumatic heart disease but stays well because she receives life-saving penicillin through our work with our partners and the Ministry of Health. Tanizia said:

 

Thank you to the doctors and those who support my treatment. May God bless you.”

 

How you can help

We receive no government funding. Our campaign for healthy hearts in Timor-Leste relies entirely on donor support. You can help by making a tax-deductible donation today. And please check our website and our Facebook page to find out more about how we are helping to mend broken hearts, not just for individual patients like Tanizia, but for a nation.

 

Thank you for your support,

Stuart Thomson, CEO

East Timor Hearts Fund

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Komunikasaun empreza - Prevalênsia moras fuan reumátika aas tebes iha Timor-Leste: hato’o husi peskiza foun

Prevalênsia moras fuan reumátika aas tebes iha Timor-Leste: hato’o husi peskiza foun

16 Abril 2018

Timor-Leste nu’udar nasaun ida ne’ebé iha prevalênsia moras fuan reumátika (RHD) aas tebes iha mundu kompara ho nasaun sira seluk. Kada sidadaun 28, na’in ida sei kona moras ne’e, ho kada labarik feto 20, na’in ida sei kona.

 

Deskoberta ne’e sai husi peskiza majór ne’ebe involve labarik eskola na’in 1400, no hala’o husi ONG Australianu, ho apoiu husi parseiru Timorense, inklui Ospitál Nasionál Guido Valadares. Peskiza nu’udar primeiru iha rai laran ne’ebe sukat prevalênsia moras fuan reumátika (RHD) iha Timor-Leste.

 

Journal Médiku Australia-nian foin daudauk publika peskiza ne’e. Peskiza deskobre katak prevalênsia RHD iha Timor-Leste sai iguál ho nasaun sira ne’ebe sofre husi prevalênsia aas liu iha mundu. Nu’udar ezemplu, Timor-Leste-nia prevalênsia to’o kazu 35 kada populasaun 1000 (tantu kazu grave no mós kazu ‘kmaan’ ka ‘kazu ne’ebe kuaze la kualifika nu’udar RHD’.) Prevalênsia ne’e aas tebes kompara ho kazu ne’ebe mosu iha komunidade rai-na’in  Aboriginal iha Australia, ne’ebe to’o de’it na’in 25 kada populasaun na’in 1000.

 

Peskiza hato’o katak deskoberta ne’ebe mosu husi peskiza ‘konservadór’ ka ‘kapazde la inklui prevalênsia loloos’, tanba labarik sira ne’ebe moras demais no la tuir ona eskola loro-loron labele inklui iha peskiza-nia programa teste médiku ne’ebe hala’o iha fulan Outubru tinan 2017.

 

“Deskoberta hirak ne’e triste demais. La ho asaun urjente, dezastre bele mosu ba ita-nia viziñu sira iha Timor-Leste”. Hato’o Sr Stuart Thomson, Xefe Ezekutivu ONG East Timor Hearts Fund-nian.

 

“Moras RHD oho joven sira ne’ebe la simu tratamentu iha sira-nia idade ideal ba kontribui ba nasan (idade husi tinan 20 to’o 30) nune’e na’ok tiha Nasaun-nia kbiit no matenek, ho rezultadu katak tristeza ne’e da’et ba beibeik.”

Sr. Stuart Thomson dehan katak East Timor Hearts Fund kontribui rasik orsamentu ba peskiza, ho apoiu husi parseiru projetu-nian inklui Menzies School of Health Research ho Telethon Kids Institute, no mós organizasaun saúde Timor-nian, atu ezije asaun efikás liu tan kontra moras RHD.

 

East Timor Hearts Fund buka hetan fundus sufisiente atu harii peskiza ne’ebe haree kle’an ba deskoberta ne’ebe sai husi peskiza foin daudauk; katak moras RHD kona liu labarik feto duke labarik mane. Labarik feto-nia prevalênsia porsentu lima, kompara ho prevalênsia labarik mane porsentu rua.

 

Moras RHD nu’udar moras fuan ne’ebe bele prevene no kura, ne’ebe afeita ema na’in millaun 32 iha mundu klaran, no oho na’in rihun 275 kada tinan, tuir dadus husi World Heart Foundation. RHD sai ativu iha pasiente bainhira pasiente kona episódiu febre reumátika agudu ne’ebe, kauza husi bateria ‘strep’ iha kulit ka kakorok-laran.

 

Peskiza-nia lider no asesór ba East Timor Hearts Fund, Doutór Josh Francis, apoia asaun prevensaun.

 

“Inklui medidas atu hasoru risku fundamentál hanesan pobreza no ema barak okupa uma kloot; ho asesu ba medikamentu penicillin, ne’ebe bele kura infesaun lubuk ne’ebe se bainhira la trata, bele fó sai moras RHD.” Dehan Dr. Josh Francis.

 

Dr. Josh Francis husu netik asaun urjente atu hasoru prevalênsia RHD aas iha ema feto tantu adultu ho labarik iha Timor-Leste. “RHD nu’udar risku boot tebes ba inan-feto no bebé, no mós ba feto isin-rua. Tan ne’e, problema ne’e tenke fó prioridade urjente tebetebes.”

 

Sr Stuart Thomson ho Dr Josh Francis disponivel ba entrevista.

Enkerimentu media: info@easttimorheartsfund.org.au

 

Study summary (Tetum) (PDF download)

Study summary (English) (read online)


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Media release Rheumatic heart disease rampant in Timor-Leste: new study

Media release

Rheumatic heart disease rampant in Timor-Leste: new study

Monday 16 April 2018

Australia’s northern neighbour Timor-Leste has one of the world’s highest rates of rheumatic heart disease, with one in 28 people affected and as many as one in 20 girls, new research shows.

 

The findings come from landmark research involving 1400 school children. It was the first to measure the prevalence of rheumatic heart disease (RHD) in Timor-Leste.

 

The Medical Journal of Australia has just published the study. It found the incidence of RHD in Timor-Leste was equal to many of the countries that have the highest rates. Timor-Leste had 35 borderline and definite cases per thousand, compared to 25 per thousand in high-risk indigenous communities in Australia.

 

The study noted that the findings may be conservative, as some children with RHD may have been too unwell to attend school when heart screening for the research was conducted last October.

 

“These findings are devastating. Without urgent action this is a disaster in the making for our neighbours in Timor-Leste,” said Stuart Thomson, the CEO of Australian medical NGO East Timor Hearts Fund.

 

“Untreated rheumatic heart disease kills young people in their prime, in their teens and early 20s, robbing this young nation of its best and brightest and causing untold misery.”

 

Mr Thomson said East Timor Hearts Fund commissioned the study, with the support of project partners including Menzies School of Health Research and Telethon Kids Institute, to push for more effective action on RHD in Timor-Leste.

 

East Timor Hearts Fund was also seeking further funding to conduct more research into the unexpected finding that girls are significantly more likely to have RHD than boys. Five per cent (one in 20) of girls screened for the study had RHD, compared to 2 per cent of boys (one in 50).

 

RHD is a preventable, treatable form of cardiovascular disease that affects more than 32 million people worldwide, and claims 275,000 lives a year, according to the World Heart Federation. Episodes of acute rheumatic fever, caused by strep bacteria infections of the skin or throat, trigger it. This leads to inflammation that damages heart valves.

Study leader and East Timor Hearts Fund RHD adviser Dr Josh Francis supported action on preventative health.

“This includes measures to tackle underlying risks such as poverty and household crowding; and penicillin to treat the infections that can lead to RHD,” Dr Francis said.

 

Dr Francis called for urgent action tackle the high rate of RHD in women and girls in Timor-Leste. “RHD can be particularly dangerous for mothers and babies during pregnancy and childbirth so this is an urgent priority.”

 

Stuart Thomson is available for interview.

Media enquiries: info@easttimorheartsfund.org.au

Study summary (Tetum) (PDF download)

Read the full study (external link)

Study summary (English) (read online)


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A message from our CEO: Join our campaign to end rheumatic heart disease in Timor-Leste

A message from our CEO

Dear friends,

Today is a bittersweet day for East Timor Hearts Fund, with the release of the findings of the landmark rheumatic heart disease prevalence study what we coordinated with our partners.

The study has found that our neighbours in Timor-Leste endure amongst the world’s highest rates of rheumatic heart disease (RHD), with one in 28 people affected by this treatable, preventable condition. Girls and young women are worst affected – one in 20 has the disease.

We are hugely proud to have played a leadership role in producing this important piece of research. At the same time we are saddened at the scale of the suffering that RHD is bringing to our friends in Timor-Leste.

No time to waste

We are people of action at East Timor Hearts Fund. There is no time for complacency.

Here’s just a quick snapshot of what we have underway to stop the suffering and save lives – programs that we can expand with the generous assistance of our supporters:

  • Delivering a locally coordinated program to provide life-saving penicillin to those with early symptoms.
  • Rolling out community education sessions to help local people and health professionals take action on rheumatic heart disease.
  • Providing training scholarships and other support to health professionals in Timor-Leste, including our friends at Hospital Nacional Guido Valadares.
  • Providing life-saving heart surgery in Australia for the most critical cases.
  • Raising our voice on the global stage with our friends in the Government of Timor-Leste and the international community to end the avoidable tragedy of RHD in Timor-Leste.

How you can help

We receive no government funding. Our campaign to beat RHD in Timor-Leste relies entirely on donor support. Please make a tax-deductible donation, and please follow us on Facebook to stay up to date on our RHD campaign.

Thank you for your support,

Stuart Thomson

CEO, East Timor Hearts Fund

 

PS: You can read the study summary online below, or find out more about the research and our work in Timor-Leste on our website.

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Heartfelt happiness for dad and son patients

Last year we had our first ever dad and son patient double, with 14 year old Paulo and his dad Filomeno both having successful heart operations in Australia. This week our CEO Stuart Thomson caught up with Paulo and Filomeno. Paulo is back at school, working toward his dream of becoming an engineer; Filomeno is able to work again, and is enjoying renewed good health. The whole family is happy - and so are we!

You can help us mend more broken hearts by making a tax-deductible donation.

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