Her name is Nashrah. The people closest to her calls her Acha. I personally have known Acha and her family for over 8.5 years now. Her brother and I studied together during our foundation years.
Throughout the years I've known Acha, she is a lovely, caring, sweet and full of life young lady. I always wished I had a younger sister like her; and she had always made me feel like I was hers. Nashrah is 19 years old now. But behind her sweet smile, little did I know she was diagnosed with a rare condition of Ankylosing Spondylitis.
Her problems initially started 12 years ago at the age of 7 when she developed a gluteal abscess after a fall. Despite multiple surgical drainage and antibiotics administration, her wounds did not heal. Further investigation revealed she was infected with Tuberculous abscess. She completed 6 months of antiTB treatment and the abscess subsided.
However, since then, she started developing back aches which was relieved by painkillers. In 2011, her symptoms gradually worsened. She had difficulties climbing stairs to her classroom and eventually even carrying her schoolbag became too taxing for her. She dreaded lying down and getting up from the bed as it was too painful.There was one time, when I visited her and her family, I placed my hands on her back gently, and there were tears in her eyes but yet she was smiling to me. It broke my heart.
Multiple medical consultations was sought, but to no avail. She was given painkillers after painkillers to alleviate her suffering but even these could not help her.As the doctors could not fathom her symptoms, a US-based rheumatologist, Prof. Asim Khan’s opinion was sought in HUKM when he came down to Malaysia. Based on her presentation which is bilateral sacroilitis and her MRI findings of sacroiliac joint erosions, he diagnosed her with Ankylosing Spondylitis, a debilitating spinal disease that causes the spinal column to fuse together, thus fiercely limiting movement and causes immeasurable pain.She was promptly started on a Tumour Necrosis Factor inhibitor to slow the disease progression.
Unfortunately, she did not respond to 2 TNFi which is Etanercept (Nov 2012-May 2013) and Adalimumab (May 2013- Dec 2013). Her medications was stopped as she stopped receiving financial aid as all Tabung Bantuan Perubatan (Medical Aid Fund) subsidies was frozen. After stopping the medication, she started developing severe headaches with blurring of vision. MRI Brain (6/12/13) was done which showed features suggestive of benign intracranial hypertension. A Lumbar puncture (spinal tap) was done as well. She was treated with long-term Acetazolamide for this.Since she did not respond to TNFis, her next line of treatment would be Tocilizumab, a biologic disease modifier drug given via weekly intravenous injections which cost approximately RM60,000 a year.
She is in dire need of treatment as she is constantly in acute pain and disease progression would mean total disability to her. Currently, she is unable to do her activities of daily life without support and she has been registered as an ‘Orang Kurang Upaya’ (Disabled Person). This medication is vital for her so her quality of life will not worsen. She is a determined young lady who strives to study and contribute to others despite her sufferings. Please help me raise a medical fund for Acha as she really needs it, please help to put a smile on Acha's face. Any amount of support are greatly appreciated. Thank you.