By Natalie E . Azar, MD
Assistant Professor of Medicine and Rheumatology
NYU Langone Medical Center
It was an honor for me to speak at the Arthritis Foundation reception in Atlanta to kick off a week of learning about what’s new and happening in the world of rheumatology.
One of the things I enjoy most about being a rheumatologist is developing relationships with my patients. Since rheumatic diseases can be complex and unique to each person, I spend a lot of time with my patients, over a long period of time. It’s important to me to take the time to listen to their needs. That’s why I focused on elevating the patient voice in silent rheumatic diseases for my keynote address.
Often, patients don’t feel like they are being heard by their healthcare providers, but they are the experts in how they feel and what’s most important to them.
As an NBC News Medical Contributor and Assistant Professor of Rheumatology at NYU Langone, I try to increase awareness about the impact that rheumatic diseases have on the daily lives of patients. It can be such a struggle, especially when it is often hard to see the symptoms. That’s why many patients feel like they have an invisible disease. Fatigue is one of the most difficult symptoms to address in rheumatic diseases, but it cannot be ignored.
Some key takeaways from my presentation for my fellow healthcare providers:
- 我们需要密切关注所有症状，尤其是那些看起来“非临床”的症状，例如疲劳、压力和焦虑。这些症状可能被忽略或被认为是主要诊断的症状(如狼疮、类风湿性关节炎)。然而，它们可能严重限制患者执行日常任务的能力，并使控制疾病更加困难。
- As providers, we want the best medical outcomes and quality of life for our patients. Validating the patient experience and educating them about their disease will increase their understanding of direct and indirect symptoms. This knowledge will empower patients to recognize early warning signs of symptoms that worsen their disease, persist for an extended time or weaken their ability to cope.
- 我们需要让患者相信他/她自己的经历，并将他/她的症状作为早期预警设备，以避免病情恶化，特别是当涉及到疲劳时。
如果你是风湿病患者，请不要对你的疲劳症状保持沉默。为自己发声。你是自己身体和痛苦的专家。
- Keep talking to your doctor about your fatigue symptoms and any post-exertion malaise. Don’t ignore these symptoms.
- Try to keep an activity log to monitor how you’re feel after performing various activities so you can track any persistent fatigue symptoms.
- Get educated about pacing and energy conservation for daily self-management of your fatigue. A referral to an occupational therapist could help you determine what works best for your schedule.
“Fostering open lines of communication between the doctor and patient is key to addressing the silent complaints in rheumatic diseases. Also vitally important, is making sure you can advocate for yourself.”
我有幸在招待会上认识了一位了不起的病人权益倡导者，山南·奥哈拉-利瓦伊，并了解了更多关于她在关节炎中成长的故事。她在年度会议上分享了她的故事，并在一个患者海报摘要中证实和提升了患者声音在医疗保健提供者、患者倡导者和相关组织讨论中的重要性，在像这次这样的重要会议上。来看看这位坚定的倡导者，她致力于为像她一样患有关节炎的人发声。
Representing the Patient Voice
By Shannan O’Hara-Levi
It’s exciting to represent the Arthritis Foundation community at the American College of Rheumatology Annual Meeting in Atlanta. I’m proud to share my story at this important conference to help elevate the patient voice, like Dr. Natalie Azar spoke about.
I am honored to be a Patient Poster presenter at this meeting.
“It’s truly powerful as a patient to attend this event and tell my story. Including patients in the conversation as a norm is a powerful way to improve outcomes and influence the direction of research, treatment guidelines and resource development.”
I welcome a seat at the table and sincerely hope that this program continues and grows to include more patient voices.
带领我们的关节炎生活之旅不是一件容易的事情，但我们每天每分钟都在做。今年，在关节炎基金会的展位上，我将和其他八名患有不同类型关节炎和不同生活经历的患者一起讨论我们与关节炎之旅中最重要的伙伴。
有一个良好的支持系统是非常重要的，我很幸运有我的丈夫达斯汀作为我的伴侣。他是我日常自我护理的积极伙伴，以管理我的关节炎。我每天醒来，不知道自己会有什么感觉，也不知道自己会有什么样的痛苦，但我的丈夫是我日常生活中唯一不变的人。他总是鼓励我把健康放在第一位。
I’m excited to share some big news for our arthritis community – a new podcast from the Arthritis Foundation is coming! Tune in to the conversation and become empowered withthe Live Yes! With Arthritis podcast. Hosted by patients for patients.
Go towww.arthritis.org/LiveYesPodcastto check out the trailer preview! The first episode will be out on November 19th. Stay tuned!
