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Living with Primary Immunodeficiency
“Caleb was born on 22 February 2004 a perfectly healthy baby. On 30 September 2008, Caleb developed high fever and had recurrent pneumonia whilst on holiday in Melbourne. On 20 October 2008, Caleb went to UMMC for his first consultation. Caleb was diagnosed with X-Linked agammaglobulinaemia (XLA).We met Dr Liew Woei Kang at KKH in Singapore and Caleb received his first intravenous immunoglobulin infusion in KKH Hospital, Singapore on 24 November 2008 ”
– Parents: Bruce Lim& Karen Koh
Iskandar bin Syahlizan
“Iskandar was suspected as Hyper IGM Syndrome when referred to immunologist team during his admission to hospital for persistent diarrhoea in 22nd August 2012 and blood sample was taken for further test.It took almost 1 year to receive the correct diagnosis, which is Hyper IGM Syndrome. Some specialist diagnose him with Interstitial Lung Disease and Loffler’s Syndrome”
–Parents: Syahlizan b. Saimin &
Siti Aminah bt. Amir
Anis Zulaikha binti Zulkefli
“It took 12 years for my daughter to receive the correct diagnosis, which is Common Variable Immune Deficiency (CVID). When we were in Hamburg, Germany from 1999 to 2003, she was admitted to hospital once because of a lung infection. Anis was given a blood test and the paediatrician later informed us that MDS had been ruled out.”
–Parents: Norhasimah Othman &
Zulkefli Mohd Ghazali
Yusuff bin Ariff
“We realised that something was wrong when Yusuff had to be hospitalised for a third time at Sultanah Bahiyah Hospital with high fever and suspected pneumonia in July, 2014. It was then that the doctor at the hospital suspected that Yusuff might have an immune problem. Yusuff was sent to HKL for further investigation. That’s where we met Prof Intan for the first timeYusuff was diagnosed with chronic granulomatous disease (CGD). It took around five months from the time he was first warded for Yusuff to receive this diagnosis. Prior to that, he was give multiple antibiotics and was even suspected of having tuberculosis at one point. ”
Soo Sheng Jie
“My son, Soo Sheng Jie was diagnosed with autosomal recessive chronic granulomatous disease Type 1 (AR-CGD) on 2007. In January 2007, Sheng Jie suffered from pneumonia with high fever and chest pains. He was referred to Tawau General Hospital and a week later, Sabah Medical Centre, Kota Kinabalu for treatment.Sheng Jie and I are grateful to Dr Amir, the late Dr Haliza, and late Dr Amin Tai for rendering adequate information and advising us on the necessary measures for preventing infection.While my son is back home in Tawau, he is being taken care by Dr George Jinivon, who has carried out his own research and provides advice, including on vaccination”
–Parents: Soo An Hock @
An Hock bin Soh
KHANTAN A/L RAJAGOPAL
My condition was diagnosed when I was 4 years old. I was prone to recurring fever, cough, and flu, and it wasn’t easily treatable. So that’s when my mom took me to consult a doctor. The first time I went to see the doctor, he already suspected I might be having PID. It was first diagnosed by Prof Dr Lokman during my first visit with him back in 1985. . Before I was diagnosed, my eldest sister passed away when she was five years old I was 4 years old then and he did the necessary check-ups.
– Khantan A/L Rajagopal
When I was a child I always suffered from lung infections and always had to stay in hospital. Also, I was always coughing. I was diagnosed with PID in 2002 at the age of 9 following an immunodeficiency screening at Mount Elizabeth Hospital (Singapore). After I transitioned from the paediatric to the adult ward, the doctors seemed clueless about my case as if they’ve never heard about it before. From childhood until today, all doctors that have consulted on me have been non-immunology specialists
– Elson Wong
MOHAMMAD HABIB BIN MOHAMMAD BIHIR
I was diagnosed with PID in 1992 when I was admitted to hospital due to lung infection and was scheduled for an empyema surgery at the Sir Charles Gairdner Hospital in Perth, Western Australia. I was told that I had PID and was started on 27 grams of thrice weekly IGIV infusion. It took 22 years before the diagnosis was made.Initially, I was told I had hypogammaglobulinaemia. However, later it was confirmed that I had agammaglobulinaemia instead.
– Mohammad Habib bin Mohammad Bihir
SARAVANAN A/L VALIATHAM
Since childhood I’ve often fallen sick with frequent fever, sinusitis, otitis media, cough, etc.
I was then treated at Dato’ Harnam Singh’s ENT specialist clinic.Looking back, it took a long 17 years before the correct diagnosis was made. All the while, only the diseases caused by hypogammaglobulinemia were treated. Before this, I have never been treated by an immunologist. I was treated by a respiratory specialist and haematologist throughout my life for hypogammaglobulinemia.
– Saravanan A/L Valiatham
STANISLAS SANJEEV MARTIN
My name is Stanislas Sanjeev Martin and I’m the eldest among five siblings. I’m also the only surviving sibling suffering from PID (X-Linked agammaglobunemia) and was diagnosed at 9 years old in 1998.I started having multiple infections when I was 2 years old. This included prolonged high fever, severe skin infection, severe ear infection (otitis media), puss would just be falling off my ear like water, and joints infection (septic arthritis). The doctors who treated me really didn’t understand what was happening, they just treated every infection singularly without investigating the source of the infections.
– Stanislas Sanjeev Martin
In Memories: 1996-2020