概述
经过多发性硬化症(MS)诊断后,您可能会发现自己正在寻求与您相同经历的人们寻求律师。您当地的医院可以向您介绍一个支持小组。或者,也许您知道已诊断为MS的朋友或亲戚。
如果您需要一个更广泛的社区,则可以访问互联网以及通过MS组织和患者组可用的各种论坛和支持小组。
这se resources can be a great place to start with questions. You can also read stories from others with MS and research every element of the disease, from diagnosis and treatment to relapse and progression.
如果您发现自己需要支持,那么这八个MS论坛是一个不错的起点。
If you’ve recently been diagnosed with MS, you can connect with people who are living with the disease atMS连接。这re, you’ll also find individuals who are trained to answer your questions. These peer support connections can be a great resource soon after your diagnosis.
MS连接中的子组,例如Newly Diagnosed Group,旨在连接寻求支持或有关该疾病有关的特定主题的信息。如果您有一个正在帮助您或提供护理的亲人,他们可能会发现卡雷帕纳支持小组乐于助人和信息丰富。
要访问小组的页面和活动,您需要使用MS Connection创建一个帐户。论坛是私人的,您必须登录才能查看它们。
Msworldstarted in 1996 as a group of six people in a chat room. Today, the site is run by volunteers and serves more than 220,000 individuals with MS around the globe.
除了聊天室和留言板外,Msworld还提供了一个健康中心和创意中心,您可以在其中分享自己创建的东西并找到生活良好的技巧。您还可以使用该网站的资源列表来寻找有关从药物到适应性艾滋病的主题的信息。
mymsteamis a social network for people with MS. You can ask questions in theirQ&A section,阅读帖子,并从其他患有这种疾病的人那里获得见解。您还可以找到与MS一起生活的其他人,并查看他们发布的日常更新。
这PatientsLikeMe网站是患有许多医疗状况和健康问题的人的资源。
这MS频道专为MS的人设计,互相学习并发展更高的管理技能。该小组的一部分是超过70,000名成员。您可以通过专门针对MS,年龄甚至症状的类型过滤。
For the most part, older discussion boards have given way to social networks. However, the discussion board这个Is MSremains very active and engaged within the MS community.
Sections dedicated to treatment and life allow you to ask questions and reply to others. If you hear of a new treatment or possible breakthrough, you can likely find a thread within this forum that will help you understand the news.
Many organizations and community groups host individual MS Facebook groups. Many are locked or private, and you must request to join and receive approval to comment and see other posts.
这个公共团体由多发性硬化症基金会主持的,它是人们提出问题并向一个近30,000名成员讲故事的论坛。小组的管理员帮助中度职位。他们还共享视频,提供新的见解和帖子主题以供讨论。
ShiftMS旨在减少许多具有MS感觉的人的隔离。这个活泼的社交网络可帮助其成员寻求信息,研究治疗,并通过视频和论坛做出决定来管理状况。
如果您有疑问,则可以发布20,000多名成员。您还可以滚动浏览已经讨论过的各种主题。Shiftms社区的成员通常会更新许多。
这不是不寻常的感到孤独在收到一个diagnosis of MS. There are thousands of people online you can connect with who are experiencing the same things as you and sharing their stories and advice. Bookmark these forums so that you can go back to them when you’re in need of support. Remember to always discuss anything you read online with your doctor before trying it.