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27 March 2012

Help Kids @ Malaysia Lysosomal Disease Association [MLDA]

Below is a community message brought to you by TianChad.com.


"Greetings from the Malaysia Lysosomal Diseases Association,

My name is Lee Yee Seng, and I am writing to you on behalf of the Malaysia Lysosomal Diseases Association (MLDA). The MLDA was formed in May 2011 and was officially launched in October 2011 by parents and supporters of patients who are afflicted by a group of rare diseases called Lysosomal Storage Diseases (LSD).

LSD is caused by an inherited genetic problem, which causes a malfunction of enzymes which function to rid the cells of waste. This then results in various other illnesses, disorders and ailments such as developmental delay, movement disorders, seizures, dementia, deafness and blindness among other things. The disease mostly affects children and they often die at a young and unpredictable age if left untreated. Diagnosing LSD can be complex and lengthy as the symptoms are similar to more common diseases. Furthermore, the diseases sometimes progress slowly and outward signs are easily overlooked. All this often causes crucial treatment time to be lost.

While there is no cure, treatment is available for some of the LSD diseases. However due to its rarity, treatment costs can run from RM 300,000 to RM 1 million per child per year. As the hospital fees and medical charges add up it often becomes too much for families to shoulder on their own. It then probably comes as little surprise that many of these children do not get the medical treatment they need and rightly deserve.

The Malaysia Lysosomal Diseases Association (MLDA) is made up of such families. Families like mine who have been faced with this grim diagnosis - and who have decided to come together to ensure they are the best possible advocates for their children’s healthcare.

Our mission is simple and focused – we are dedicated to improving the lives of all patients afflicted by Lysosomal Storage Diseases by:

  • Advocating for the establishment of a sustainable healthcare system for all LSD patients.
  • Creating greater awareness of the 50 Lysosomal Storage Diseases.
  • Supporting research for a cure and treatment that will improve the quality of life of the patients.
  • Developing and sustaining an effective patient community network that provides comprehensive support for the ever-increasing needs of individuals and families affected by Lysosomal Storage Diseases.

Our goals can only be achieved if we garner sufficient support from the public. We need people to know these diseases, understand their impact and see their consequences. We also need them to realise that with early diagnosis and timely treatment, these children can lead happy, successful and fulfilling lives.


To this end, the MLDA will be launching its ‘Every Life Counts’ Solidarity Campaign in February in conjunction with the World Rare Disease Day on 29th February 2012. The campaign will kick start our efforts to recruit 10,000 members of the public to become Friends of MLDA. It is our hope that these 10,000 voices will help us bring these rare diseases out of obscurity and into the consciousness of the public. During the campaign which will run through July 2012, the Association will engage the general public as well the corporate and community sectors through numerous activities that aim to raise awareness on LSD.

We know that alone we are rare but together we can be strong. We are confident that through your support we will successfully reach out to the masses to garner the support of the 10,000 (and hopefully many more) voices so that we can spread our core message that early diagnosis and treatment can truly mean the difference between a life fraught with hardship or one filled with possibilities. Through each voice we hope to move closer towards establishing sustainable treatment policies as well as providing quality support for patients and their families.

We need your help and would like to request that you help us spread our message and gain support for our campaign. We would be grateful if you could put our ‘Join MLDA – Be a Friend’ banner up, as well as blog about our association, our goals and the ‘Every Life Counts’ Solidarity Campaign. Your support will be extremely useful in helping us reach and hopefully surpass our goal of getting 10 000 people to sign up.

You will be able to get more information about the Association from our website www.mymlda.com and http://www.youtube.com/watch?v=yECd3tl2DQY.

We thank you for considering our request and hope that you will be able to help us spread our message through your blog.

Thank you.
Yours sincerely,
Ir Lee Yee Seng
President
Malaysia Lysosomal Diseases Association (MLDA)



More Information Regarding Lysosomal Storage Diseases and the MLDA

Lysosomal Storage Diseases

Lysosomal Storage Diseases are a group of 50 rare diseases. They are a result of an inherited genetic problem, which causes a malfunction of enzymes that function to rid the cells of waste. This then results in various other illnesses, disorders and ailments such as developmental delays, movement disorders, seizures, dementia, deafness and blindness among other things.

The diseases affect mostly children and they often die at a young and unpredictable age if left untreated. Diagnosing LSD can be complex and lengthy as the symptoms are similar to more common diseases often leading to misdiagnosis or delayed diagnosis. Furthermore, the diseases sometimes progress slowly and outward signs are easily overlooked. All this often causes crucial treatment time to be lost.



Malaysia Lysosomal Disease Association


Treatment


While there is no cure, treatment is available for some of the LSD diseases. However due to its rarity, treatment costs can run from RM300, 000 to RM1 million per child per year. As the hospital fees and medical charges add up it often becomes too much for families to shoulder on their own. It then probably comes as little surprise that many of these children do not get the medical treatment they need and rightly deserve.

The Malaysia Lysosomal Diseases Association (MLDA)

The Malaysia Lysosomal Diseases Association (MLDA) is made up of families who have been faced with this grim diagnosis - and who have decided to come together to ensure they are the best possible advocates for their children’s healthcare.

MLDA’s Mission

MLDA’s mission is simple and focused – It is dedicated to improving the lives of all patients afflicted by Lysosomal Storage Diseases by:

  • Advocating for the establishment of a sustainable healthcare system for all LSD patients.
  • Creating greater awareness of the 50 Lysosomal Storage Diseases.
  • Supporting research for a cure and treatments that will improve the quality of life of the patients.
  • Developing and sustaining an effective patient community network that provides comprehensive support for the ever-increasing needs of individuals and families affected by Lysosomal Storage Diseases.

The Association’s goals can only be achieved if it garners sufficient support from the public. People need to know about these diseases and understand their impact. They also need to realise that with early diagnosis and timely treatment, these children can lead happy, successful and fulfilling lives.

If you require more information, please feel free to visit the websites below or contact us for more information. Your support and effort is greatly appreciated.

MLDA Website : www.mymlda.com
World Rare Disease website : http://www.rarediseaseday.org/



PERTUBUHAN PENYAKIT LISOSOMAL MALAYSIA
(MALAYSIA LYSOSOMAL DISEASES ASSOCIATION)
(No. Pendaftaran: 2621-11 NSE)
1520, Taman Bukit Kaya, 70200 Seremban, NS, Malaysia.
Website: www.mymlda.com Email: info@mymlda.com
Contact no: 019-6899620 (Secretary)


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