Don’t turn your back on AS

I was in a car recently with a friend and she had asked me to simply check for oncoming traffic while she backed her car out of the parking lot. However, my neck was stiff, and I was struggling to move, eventually my friend grew impatient and asked why I could not just turn and check. Even though my friend knew of my condition, at that moment she forgot because, unlike other illnesses we look normal with AS at first, the stiffness and agony are only experienced and suffered by the patient and others cannot fathom the pain we experience.

Ankylosing Spondylitis (AS)is a part of me, and it will be with me for the rest of my life. I was only 26 when the early symptoms struck. I started feeling this occasional pain in my spine and eventually lower back pain, pain in the buttocks area after long periods of sitting down and stiffness in the morning, where I would struggle to get out of bed. Imagine waking up in the morning and being unable to move; and you need to wake up two to three hours earlier than normal people before you can regain some mobility. I feel bad that I can’t get up immediately like normal people do, and I long to be like the people who can get up normally.

A few years after experiencing the early symptoms, the pain continued, and I was hospitalized for a persistent fever. A blood test later revealed that I had a high inflammation marker and after consulting a rheumatologist, I was finally diagnosed with AS last year, about 7 years after the first occurrence of pain.

This is often the case, as many might write off AS in their early years as just another back pain, but it’s more than that. I was devastated and could not accept it at first, mostly because I had no idea what AS was and finding out that there was no cure, it made me feel worse. It’s quite common that AS is misdiagnosed and treated with pain killers, it usually takes patients years before correct diagnosis. If you’re unsure you have AS, check out this website.

My family has a history with an autoimmune disease called Systemic Lupus Erythematosus (SLE) which affected my late mother and sister. I was relieved to know that I had escaped SLE, but unfortunately, I was diagnosed with a whole different autoimmune disease instead.

By profession, I am a social worker at a church, and thankfully I don’t have to be tied down to my desk. Moving around helps ease the pain as AS gets worst when someone is resting. However, people often misunderstand the seriousness of it especially when it is in its early stages.

First symptoms of AS shows in late teens or twenties, and there is this misconception that if a young person complains about back or arthritis pain, people don’t believe them and often think they are just exaggerating or trying to be lazy.

This is not the case, as this pain does not just affect us physically, but there’s an emotional suffering to it as well. The pain can sometimes keep us up at night, making us feel lethargic during the day. However, I am hopeful that with better understanding and awareness of this disease that can change.

I hope that healthcare professionals as well, will recognize this disease early on and not brush it off as just another sport injury, regular back pain, bad posture or even sleeping on a bad mattress. While there is no cure for this disease, there are treatment options available that are also putting AS patients off it.

My brother for example, who has shown similar signs of AS, refuses to get himself checked out as he fears having to pay exorbitant amounts for the treatment and  he has a family to support. However, I find that it would be worse for him if he does not arrest the problem early on, as with AS, some patients find it hard to hold on to their jobs.

AS is very much a pain in a patient’s life, I have a passion for hiking and would love to experience the trails and environment around Malaysia. However, I end up being the person who organizes these trips for my friends, while I stay at home to nurse my condition.

I commend the efforts of Arthritis Foundation Malaysia who is going out to help people like me and I hope that going forward, more people, including the government will step up and help us regain some normality in our quality of life.

 

Tong Yen Yee
Recipient of AFM’s Ankylosing Spondylitis Fund

别忽略僵直性脊椎炎

日前,我坐在朋友驾驶的车上,当时她叫我留意四周的交通状况,因为她要从停车格退车。但是,我的颈部已僵硬,我没办法移动身体,那时我的朋友不耐烦地问道,为什么我不能转头帮她看看交通状况。 虽然,我的朋友知道我的病况,可是在那一刹那间她忘记了,因为与其他疾病不同的是,僵直性脊椎炎(AS)病患表面上与正常人无异,再者也只有病人本身才能够体验这种痛苦和僵硬程度,其他人根本不了解这种痛楚。

僵直性脊椎炎是我这一生人必须面对的疾病。初次发作时,我只有26岁。 自此以后,我不停地感觉到脊椎疼痛,下背痛、久坐臀部痛以及早晨起床时身体僵硬。想象一下,你早晨起床时无法移动,每天早上都需要比正常人早醒二至三个小时躺着以后才能慢慢移动身子,不能像正常人一般躺着要起床就可以立刻起床那种,心里很难受也非常羡慕可以正常起床的人。

在经历了数年的初期症状以后,这种疼痛并没有消逝,直到近两三年内我的身体时常莫名其妙的高烧不退多次入院接受检验。验血报告显示,免疫系统出现了不寻常的因子而且发炎指数很高,建议我去咨询风湿病专科医生做详细的检验,经过一系列的检验以后,我于去年被证实罹患僵直性脊椎炎,这是距离我疼痛初次发作的第7年。

这是很常见的事情,因为很多人在疼痛初次发作时,误认为是一般的背痛而已,但事实并非如此。刚开始时,我感到很震惊也难以接受这个事实,因为我从来不知道什么是僵直性脊椎炎,也被告知这是无法根治的疾病,这个情况让我感觉更沮丧。僵直性脊椎炎经常被误诊,甚至以服用止痛药来治疗,患者必须在多年以后才会被诊断出患上这个疾病。 如果你不确定自己是否罹患僵直性脊椎炎 ,请浏览这个网站

我的家人皆有一种自体免疫问题,即系统性红斑狼疮(Systemic Lupus Erythematosus,简称 SLE),它影响了我已故的母亲和我的家人。 我了解系统性红斑狼疮的病症但是我没想过我却被诊断出另外一种截然不同的自体免疫问题,对我而言这是一个难以接受的事实。

我是一名教会的社会关怀工作者,因此我的工作无须长时间在办公室里工作。我每天向外跑的工作都让我忘记了自己是个病患,因为只需要一直走动就不会感觉身体那么地疼痛,因为僵直性脊椎炎会越休息越痛。 但是,人们经常低估了这个疾病的严重程度,特别是在初期阶段。

僵直性脊椎炎最初的症状会发生在十八九岁或二十岁出头的年轻人身上。一些人会认为,我们不该相信那些申诉背部或关节疼痛的年轻人,以为他们只是夸大其词,想偷懒而已。

事实并非如此,这种疼痛不仅影响我们的生理,它也影响我们的情绪。 有时候,这种疼痛在夜间还导致我们无法入睡,白天感觉昏昏欲睡。我希望通过提高公众对于这个疾病的醒觉及认识,可以改变这个情况。

我希望医生能够及早确诊这个疾病,因为过去的我每次疼痛都会去看医生,但是医生都会把我的症状归咎于普通问题例如运动受伤、一般的背痛、不当的姿势或睡在劣质的床褥。尽管这是无法根治的疾病,但是市面上有一些治疗方式,却被僵直性脊椎炎病患拒之门外。

举个例子,我的哥哥也出现类似僵直性脊椎炎的症状,但是他不愿意接受体检,因为他担心自己必须支付一笔昂贵的医药费,毕竟他还需要养家糊口。 不过,我认为如果他不及早对症下药,情况可能会恶化。某些僵直性脊椎炎病人会因为患上这个疾病而没办法继续工作。

僵直性脊椎炎严重打击患者的生活。我是一个非常热爱登山的人,因可以在登山的同时感受大自然环境。但是现在我连激烈一些的动作都做不了,所以登山对我来说是很遥远的事情了。但有朋友邀一同登山或营会有登山活动的时候我心里面非常难过也很无奈,因为我只能羡慕而无法参与。

我要表扬马来西亚关节炎基金会尽心尽力帮助僵直性脊椎炎病人的善举。我真心希望未来还会有更多人包括政府部门会采取行动帮助我们,让我们重获新生。

唐燕怡(Tong Yen Yee)
马来西亚关节炎基金会(AFM)基金受益人