FEBRUARY 26 — Do you know that rare disease day is on the last day of February? Many of you may not be aware of how many patients and families are affected by rare diseases and their impact on Malaysia.
Society tends to avoid families with rare diseases because of how the rare disease makes the person look or behave, and because it is inborn and caused by the family’s genes. This adds psychological and social burden, from shame and disgrace to misunderstanding and exclusion from society. Even unaffected siblings and relatives can get segregated. The financial burden is very high, and most of the patients are denied insurance.
A rare disease is typically disabling. The patient’s quality of life is affected by the lack or loss of independence due to the chronic and frequently life-threatening aspects of a rare disease, which keeps getting worse as each day passes. There are often no existing effective cures and this adds to the high level of pain and suffering endured by patients and their families.
All relevant authorities to tackle SMA and rare diseases holistically. From its prevention; to early and accurate detection and intervention; to proper management and treatment. From healthcare to psychosocial, accessibility, education and work, to respite and palliative care – for the patient and caregivers alike.
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