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July 2022 [Before] |
Every movement of Khayla will lead to the risk of broken bones and so far, Khayla has suffered 50 broken bones in her calf, leg and hand.
- Updated on 03/07/2022
Pregnant with the first child is often the most exciting news for couples who want children. At this point, many common worries begin to creep into the minds of mothers and fathers.
Parents are encouraged to undergo a thorough health examination to identify the risk of diseases that the child may inherit later.
According to Consultant Obstetrician & Gynecologist, Dr Patricia Lim Su-Lyn, pregnancy is not just about fetal growth, changes in the mother’s physiology and the chances of having children.
It goes beyond many phases and risks, depending on the background of the couple in question.
Just like its name, Penyakit Jarang Jumpa (PJJ), the awareness of Malaysians on the ‘rare’ diseases suffered by individuals around them is still low, thus causing patients to fail to get proper treatment.
In fact, Pediatrician and Fellow of the United Kingdom College of Pediatrics and Child Health (FRCPCH UK), Professor Dr Zabidi Hussin revealed, there are only four hospitals in the country that offer PJJ specialized services with 13 specialist doctors.
PJJ refers to a disease that affects 1 in 4,000 people in the community, but in reality the ratio is even greater. According to Zabidi, in Malaysia it is estimated that there are almost 1,300 types of PJJ.
What is MyFundAction doing?
We are supporting up to 20 patients that were diagnosed with rare diseases to help them get urgent surgery if needed, treatment needs and their medical equipment. The objective is to provide thousands of people a “second chance” to receive the care they require in order to live a better life.
| Project name | We Care For You |
| Objectives |
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| Target recipients | 60 patients annually |
| Target locations | Entire Malaysia |
| Contribution needed | According to the patient’s needs |
The rare disease community, especially children, face a variety of challenges on a daily basis. So, what we can do as Malaysia is we can contribute and support their medical needs such as treatment cost and their medicine.
READ OUR STORY HERE
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