转载自世界狼疮基金会~~

Manny Roldan

Manny Roldan

Lupus in men isn’t rare. In fact, there have been several high profile men with lupus: former Major League Baseball outfielder Tim Raines, R&B singer Seal, Hip Hop artist J Dilla, and late CBS broadcaster Charles Kuralt.

This month, we talk to Brooklynite Emmanuel “Manny” Roldan, age 46, to get a local guy’s perspective on living with lupus.

When were you diagnosed?

I was diagnosed with lupus in 1982. I had never heard of it before then. It took almost two years until I was diagnosed. My symptoms were severe swelling of all joints to a point that I could barely, if at all, move.

How has lupus changed you?

It has changed me, in a lot of areas of my life. It has taken things from me, like being able to work and play sports. I haven’t worked in a long time. My last job dealt with heavy lifting and deliveries, but I am unable to work at this time due to hip and knee replacements and other lupus factors.

At first I was very angry and depressed, however, today I am doing everything possible to live another day. I am very cautious in my daily routines. I truly miss having a “normal” life, but I deal with it.

How do you cope with your lupus?

Sometimes it is hard, but I’ve learned to live with it a day at a time, to the best of my ability. What works for me is taking my meds as prescribed and getting a lot of rest. I try to keep track of anything that doesn’t feel normal. My sister also has lupus, so I always can talk to her (and to my doctor) about what I’m going through.

How do you think lupus has shaped your relationships and social life?

Well, to be honest, it has changed my relationships in all areas of my life. I can say it has broken up some relationships, but today I have learned to treasure the ones I do have.

What is your biggest hope for lupus research?

I hope for a cure, but I’d also like just one pill that can put lupus into long-term remission.

感谢“右手掌心有痣”小主棒棒哒的翻译~

翻译/右手掌心有痣

曼尼•罗尔丹

男性患红斑狼疮并不罕见，有不少名人也有此病，如前大联盟棒球外野手Tim Raines（瑞恩斯）、R&B歌手Seal、Hip Hop大师J Dilla以及最近的CBS播音员Charles Kuralt。

本月，我们采访了46岁的布鲁克林•伊曼纽尔•曼尼•罗尔丹，以了解当地红斑狼疮男性患者的一些观点和看法。

1.你什么时候确诊的？

我是1982年确诊的。在此之前，我从未听说过此病，花了将近两年时间才被确诊。我的症状是严重的关节肿胀，几乎不能动。

2.红斑狼疮对你有什么影响吗? 　　

它改变了我生活的很多方面。我失去了一些东西，像工作和运动。我没有工作很长时间，上一次的工作是处理重型起重和运输，但如今我不能干这份工了，由于髋关节和膝关节置换手术以及其他狼疮影响。　　

起初我很生气、沮丧，但现在为了活下去，我会尽自己最大的努力。日常生活中我非常小心谨慎，我真心想拥有一个“正常”的人生，但我不得不面对这样的生活。

3.你如何应对你的疾病？

有时候很煎熬，但我已经尽自己最大的努力逐步学会了与它共存。我所要做的就是按时吃药和多休息，记录下任何不正常的状态。我姐姐也有红斑狼疮，因此，我可以经常跟她（或者我的主治医生）谈论我的状况。

4.你怎么看待狼疮对你的人际关系和社会生活的影响? 　　

嗯,老实说,它改变了我生活的所有领域的人际关系。甚至可以说它破坏了一些关系，但如今我学会了珍惜我所拥有的。　

5.关于狼疮方面的研究你最大的希望是什么? 　　

我希望有新的疗法，但我更希望只是一个药丸就可以使病情得到长期缓解。