In our journey for acknowledging and fight for SMA families’ rights and access to medication, WeCareJourney took another step by approaching doctors to acquire their supports. WeCareJourney was invited by Ortophedic Department of Hospital Universiti Kebangsaan Malaysia (HUKM) for a sharing session on SMA. The sharing session took place at Ortopedic Department on 11 July 2019 from 11 a.m. and ended almost at 1 p.m. It involved a group of doctors, specialists and trainees from Orthopedic Department of HUKM.

WeCareJourney founder and co-founder, Edmund Lim and Yap Sook Yee shared about WeCareJourney’s roles, hopes, experiences and stories about SMA patients in Malaysia. The session was also joined by Sha Roose, who was diagnosed with SMA type IV. She shared about her perspective and challenges faced in her journey including the lacking of facilities and necessity for OKU. She also expressed her concerned regarding attitude of young doctors especially in dealing with SMA patients and families. It was supported by Sook Yee, who also shared that young doctors especially showed less compassion and disinterest in dealing with patients and families of diseases that are out of their interest or area of expertise.

It was also found that most of the doctors who attended the sharing session have no experiences in dealing with SMA patients before. Prof. Dr. Amaramalar Selvi Naicker from Rehabilitation Medicine advised WeCareJourney to cooperate with as many as medical officers especially doctors to have stronger supports and act a medium to connect with higher authorities. As a vice-president of Spina Bifida Association Malaysia (SIBIAM), another type of rare disease, she also proposed WeCareJourney to collaborate with other association with similar medical needs and concern to grab the attention from higher authorities. To convey her support, she also welcomed any invitation from WeCareJourney for a talk regarding health issues especially issues related to SMA patients.

Another doctor that showed full interest and support for WeCareJourney is a senior orthopedic surgeon of HUKM. He conveyed his support and understanding about what SMA families had to go through. He also acknowledged great efforts and full determination shown by WeCareJourney to fight for SMA families’ needs and rights. He emphasized to the young doctors especially the trainees to at least show some compassion when dealing with SMA families or any other diseases. The session ended with a photography session and lunch with the leadership team of doctors from Orthopedic Department.

WeCareJourney would like to thank all the doctors from Ortophedic Department for the opportunity to share our knowledge and sharing on SMA. We look forward to a future collaboration with your team.

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