Mr Dominic Wong
Age : 48 ( diagnosed with Psoriasis at age 28 )
Testimony
My name is Dom and I was diagnosed with Psoriasis in 2003 at age 28. I was then diagnosed with Psoriatic Arthritis (PsA) – affecting the spine in 2020 at age 45. 3 out of 10 patients with Psoriasis will be diagnosed with PsA in their lifetime. Through Arthritis Foundation Malaysia (AFM), I would like to share my Psoriatic Arthritis journey and my lived experience with this illness. I will also share the experience of 2 other friends from the Psoriasis Association of Malaysia that have PsA. I will also share my hope for the future.
I wanted to ask for your time to imagine with me, the pain and discomfort that our fellow patients encounter. I would like to ask you to remember a time when you had a toothache. Close your eyes and remember the previous pain. That nagging, constant pain in your mouth. Always there, not ceasing, possibly throbbing. Now imagine that similar pain copied and pasted to your elbow, or your spine or your knees caps. Always throbbing always present. If you could imagine it, this gives you an insight into the pain that patients will have to go through daily. Thank you for taking the time to walk in the shoes of a patient.
My own story of diagnosis and management
There are a few early signs for individuals that may have PsA onset. My experience started with fatigue, the pain came about 3 months after. I was on a holiday and I was extremely tired after breakfast. I told my family I had to rest and sleep in. I was once told my doctor, that if you are on holiday and you feel extremely tired – you may want to speak to your doctor to pursue a medical investigation.
After consulting my dermatologist, I was advised to see a rheumatologist. The rheumatologist recommended further checks with other specialists to rule out other conditions. I went to consult with a Cardiologist, Endocrine Specialist, Neurologist, ENT Specialist, Immunologist and finally back to see the Rheumatologist. During this medical investigation. I had to further consult the ENT and sleep dentist due to being diagnosed with sleep apnea (a known comorbidity). The entire journey of going from doctor to doctor took about 1 year.
I pursued the above medical consultations via the private medical care route as this was during the pandemic. I wanted to get the fastest diagnosis possible and to choose the doctors based on their experience.
I am currently using biologics to manage my PsA. For now, the pain has been in remission. Fatigue remains my symptomatic challenge as there are days when this symptom is very troublesome.
Living with the disease through my lived experience and via the lens of 2 other friends from Psoriasis Association of Malaysia (PAM)
As I am just diagnosed recently – I was advised to start early effective intervention to ensure that the disease can be slowed down. The objective is to stop or delay the in-body inflammation that damages our spine, joints, and other areas. I asked my doctor, given effective medication – is there any expectation of what will be the state of my illness in 5 or 10 years? My rheumatologist did say he can’t give me a prediction. They can only monitor my health and symptoms over time to see the illness’s progression.
I also want to take this opportunity to share the experience of 2 friends from PAM, who had initially started with the older DMARDs. Over time, they could not tolerate the side effects and are trying their best to find cost-effective means for the biologic DMARDS (In ringgit terms, it is usually a 5-figure-a-year therapy). Such treatments are not a cure and will be needed long-term.
I have asked for their permission to share their challenges, as they have been diagnosed earlier than me.
Adrian, now in his 30s, had spoken to me about his PsA many years ago. Recently we caught up about his challenges.
PsA can disturb Adrian’s sleep and rest. Inflammation causes continuous waking and sleeping. This is because he is adjusting his posture for comfort. He doesn’t get a good night’s sleep when inflammation is very active. Luckily, he is able to get some assistance with biologics treatment recently and it has made a difference for him.
Biologics is too costly for him as an “out of pocket expenses”. Concerning Adrian’s work-life situation, when he is off the medicine and his pain is at a level of 8 / 10, PsA becomes more challenging. Adrian has shared that when he interacts with his colleagues in the workplace, it is hard for him to turn his neck and it can be socially awkward. He will have to turn his entire body rather than his head. People misunderstand this when he is not facing them. They may think he is being unfriendly or arrogant for not going through the normal body movements when we engage in social interaction.
While driving, it is also challenging for him to “Turn around for a quick look” when switching lanes, instead relying heavily on mirrors (left, right and the rear). Certain activities or sports like badminton or basketball are inaccessible to him. Sports or activities where he has to look up prove immensely challenging. The fusing of joints around his neck restricts motion. Another challenge he faces is knee pain. It is hard to identify if Adrian had hurt himself or is arthritis causing the issue. He must go see an orthopedic specialist to have a proper diagnosis.
Sofia, who has psoriatic skin lesions and also PsA shares the following. “There have been people who have refused to shake my hands. They are cautious when they stand next to me. The stares that people give me are as though I am from a different planet. Functions, celebrations, and festivals are not my favorite because I need to face people and answer their questions. I have also been called ‘Robot’ due to my affected posture.
Sofia was diagnosed with plaque psoriasis when she was 12 years old. There was a time when almost 70% of her body has been covered with lesions before.
“I have experienced mild to severe psoriasis. I was bedridden and could not work for 1½ years as I had arthritis, which came with the condition. I thought my life would end as I had five other complications that caused my fingers to be deformed and limited my neck movement.”
She said she needed at least 30 minutes to ease the stiffness every morning when she woke up. The pain, however, would remain. Now on biologics, it makes a big difference in her life. The biologics are costly for the long term.
My hope for the future
With the advancement of therapies, I truly hope that one day soon, there will be a permanent treatment for our autoimmune illness. There are about 80 over autoimmune illnesses.
I hope that the Malaysian healthcare space (both private and public) will allow newer therapies to be accessible to Malaysians. A common barrier is the high cost of the newer advanced therapies. Advancement in healthcare areas such as insurance reform, patient support programs or other innovative solutions, is much needed for patients with active autoimmune illnesses.
Finally, I hope that all arthritis patients can remain positive and find inspiration for their receptive journeys. It is possible to learn from other patients who have travelled further down the road with chronic illness. I hope that Malaysians with autoimmune illnesses will be able to “Find a path to living well, live the best life you can live – even with a life that contains long-term illness”
Dominic Wong
15 October 2022