歪果仁系列狼疮故事：关于狼疮最大的秘密

翻译：风吹过来你的样子

校对：Sashatimaru

Cynthia Jones

Cynthia Jones

Cynthia Jones has lived with lupus for more than 15 years. Born and raised in Laurelton, Queens and White Plains, New York, Cynthia is Jamaican-American (her mother was from Jamaica, W.I.) and was diagnosed with systemic lupus erythematosus (SLE) in 1989 at the age of 29. Fever, swelling of her fingers and hand joints, extreme fatigue, inflammation of the lining of her heart (pericarditis) and lungs (pleurisy) are several of the symptoms that, at age 44, she continues to experience. Cynthia's maternal great-grandmother, grandmother and mother all suffered from rheumatoid arthritis, and her mother underwent three kidney transplants during her lifetime. While it was not known at the time, her mother’s doctors now suspect that the renal failure was SLE-related. In this interview, Cynthia shares her story of life with lupus.

辛西娅·琼斯患狼疮已超过15年。她出生在小镇劳瑞顿, 成长于纽约皇后区怀特普莱恩斯。辛西娅是牙买加和美国混血儿(她的母亲是来自牙买加)，在1989年29岁被诊断出患有系统性红斑狼疮(SLE)。发热、肿胀的手指和手关节, 极度疲劳, 心包炎症(心包炎)，肺炎(胸膜炎)这几种并发症, 一直到44岁都伴随着她。 辛西娅的曾祖母,祖母和母亲都患有类风湿性关节炎, 并且她的母亲一生经历了三次肾移植。虽然当时不知道, 现在她的母亲的医生怀疑是SLE导致的肾功能衰竭。在这次采访中, 辛西娅分享她和狼疮生活的故事。

Describe what symptoms led to your diagnosis. 

描述一下是什么症状导致了你的确诊

In 1989, I was under a great deal of pressure, both professionally and personally, and experienced chronic anxiety and emotional stress. I was in the midst of a divorce and was also starting a new business in the cultural-heritage tourism industry. I was traveling back and forth between Jamaica and New York and was tired all the time. My ankles, hands and finger joints were swelling and my hairdresser noticed that my hair was beginning to fall out. I was also experiencing some chest pain. My mother

suspected that I had developed rheumatoid arthritis as she had when she was 28 years old. However, a doctor in Jamaica suspected that my symptoms were related to lupus. I was fortunate to have a definitive diagnosis in August of 1989 and was immediately placed on corticosteroids.

1989年, 我经受了很大的压力, 工作上的，个人生活上的，经历了长期的焦虑和情感压力。那时候我正准备离婚, 也刚开始我在文化遗产旅游业的生意。不得不在牙买加和纽约之间来回穿梭, 总是感到很疲惫。我的脚踝, 手和手指关节开始肿胀，并且我的发型师注意到头发开始脱落。也时常感觉胸部疼痛。我的妈妈怀疑我得了她在28岁时患上的风湿性关节炎。然而, 牙买加医生怀疑我的症状与狼疮有关。我很幸运在1989年8月有一个明确的诊断, 并立刻使用糖皮质激素治疗。

Did you know what lupus was before you were diagnosed? 

在你确诊之前， 你知道什么是系统性红斑狼疮吗？

I had vague information about lupus. I had heard of it but knew little about what the disease actually was. All I really knew about was the butterfly rash. I will never forget looking at my initial lab reports and reading the words “connective tissue disease” and “fatal.” I was utterly devastated because back in 1989 a greater percentage of young women did not survive beyond 5 – 10 years post-diagnosis.

我基本不太了解红斑狼疮的信息。虽然听说过, 但却不知道这个病究竟是怎么样的。了解过蝴蝶皮疹。 永远不会忘记在我第一份检验报告上映入眼帘的：“结缔组织疾病”和“致命的” 这两个词。 我近乎绝望, 因为早在1989年，确诊后的大部分年轻女性存活没有超过5 - 10年。

How has lupus affected your career and personal life? 

红斑狼疮是如何影响你的职业生涯和个人生活的？

The first six months after my diagnosis my life just stopped. I was heavily medicated and in and out of the hospital. I had to give up my work in Jamaica, my apartment in Manhattan and move to my father’s home in Queens. When I was in the process of being diagnosed I was down to about 95 pounds. With incredible support from my family (especially my father), friends and rheumatologist, I slowly began to regain some of the weight and to reconstruct my life around lupus. I was severely limited in what I could do but was able to return to my business. As I tried to adjust to life with lupus, I eventually decided to pursue a master’s degree in international tourism at New York University.

确断后的前六个月我的生命好像停止了。我吃很多药，不断地进出医院。我不得不放弃我在牙买加的工作，在曼哈顿的公寓, 搬到我父亲在皇后区的家。我在被诊断出的过程中体重下降到了95英镑。通过家人(特别是我父亲), 朋友和风湿病学家的大力支持, 我慢慢开始恢复我的体重并且重建我的狼疮生活。 我被严重限制做一些事情，但能做回我之前的旅游事业。我试着适应狼疮生活, 最终决定攻读纽约大学的国际旅游硕士学位。

What changes have you had to make to your life as a result of having lupus? 

因为狼疮你的生活有什么改变?

In 1990, I returned to Jamaica to help my mother, a former professor of education at SUNY Old Westbury, build her tour operation. By now I had developed a hypersensitivity to the sun and UV radiation, a major obstacle to my operational and site research responsibilities within the company. I would have to get up at very early hours to do site research and meet clients. We also had to outfit all of the touring vehicles with special UV-protection tinting and make numerous accommodations for my illness, extremely difficult and tedious but I did find ways to compensate. After my mother died in 1991 I submerged myself in the business, not knowing how to deal with the devastating grief I was feeling. I was now beginning to experience cognitive difficulties involving concentration, organization of thoughts and problem-solving. For several years these cognition problems were frustrating and frightening. While pursuing my graduate studies, the cognitive difficulties were almost paralyzing. Only with the intervention of my rheumatologist at the Hospital for Special Surgery, who helped me get into a unique cognitive retraining program called MINDFULL, was I able to learn compensatory cognitive strategies and techniques that are now helping me to complete graduate school and, hopefully, return to my profession.

1990年, 我回到了牙买加来帮助我的母亲, 她是前纽约州立大学，韦斯特伯里分校的教育学教授, 并且建立了她的旅游业务。 由于我对太阳，紫外线过敏, 这是我工作上对现场研究的最大障碍。我不得不很早就起床进行现场研究和约见客户。 我们还必须把所有的旅游车辆都进行着色，用来防护特殊防紫外线, 以及其他很多为我的疾病而做调整的措施。 这些都不简单，让人讨厌， 但我还是找到了折中的办法。我的母亲1991年去世后，我沉浸在自己的事业里, 不知道该如何处理母亲的去世给我带来的悲痛。那时候开始， 我感觉自己很难集中注意力，组织思想， 解决问题。 多年来这些认知问题都困扰着我，令人沮丧，害怕。在我的研究生学习中, 认知困难几乎瘫痪。通过我在特殊手术医院的风湿医生的介入（他帮助我加入了一个叫做MINDFULL的独特认知训练计划），我才学会代偿性认知策略和技巧，才得以帮助我完成研究生学习。也希望能回到我的专业。

What would you say to other young women suffering with lupus? 

你会对其他患有狼疮的年轻女性说些什么呢？

.Learn as much as you can about the disease. Don’t depend on your doctor alone; get involved with a local SLE support group and learn to become your own best advocate. Education is really the key to meeting the enormous challenges of living with lupus. Nutrition is also very important as what we put into our bodies can really affect how we feel. We have to remember to treat our whole body, physical, mental and spiritual, with care and respect, the holistic perspective

尽可能多的了解这种疾病。不要仅依赖于你的医生, 参与当地的系统性红斑狼疮支持团体，学习成为自己最好的倡导者。知识是接受与狼疮生活这一巨大挑战的关键。营养也很重要, 因为吃进我们身体的食物都会影响我们身体的感觉。必须记住关心，尊重我们的身体，包括物理上的和精神上的，把他们当作一个整体去对待。

What is the biggest secret about lupus? 

关于狼疮最大的秘密是什么?

Life with SLE is still very much worth living, but you must be determined and remain vigilant in finding and creating your own path toward that living. You have much more power in your life than you might think.

与狼疮为伴的生活也是有意义的, 但是你必须意志坚定，保持警惕，去发现和创造属于自己的生活。要知道生活中，你们有着比你们自己了解更伟大的力量。