评论 8
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A
8 几个月前

I stumbled upon this website while looking for inf...

I stumbled upon this website while looking for information on tuberous sclerosis and I'm so glad I did. The content is presented in an easily understandable way, with clear explanations and helpful resources. It's great to see an organization dedicated to supporting individuals and families affected by this condition. The website is a valuable source of information and the support groups they offer are a fantastic resource. Overall, I highly recommend the Tuberous Sclerosis Association's website for anyone seeking information and support.

G
9 几个月前

The Tuberous Sclerosis Association's website (tube...

The Tuberous Sclerosis Association's website (tuberous-sclerosis.org) is a fantastic resource for individuals and families affected by tuberous sclerosis. The content is well-presented and easy to understand, making it accessible to a wide audience. I particularly appreciate the support groups provided, as they create a sense of community for those dealing with this condition. I highly recommend visiting tuberous-sclerosis.org for anyone seeking information and support related to tuberous sclerosis.

P
1年以前

The Tuberous Sclerosis Association is an amazing o...

The Tuberous Sclerosis Association is an amazing organization that provides invaluable support and resources for individuals and families affected by tuberous sclerosis. Their website is a wealth of information, with clear and comprehensive explanations about the condition, treatment options, and research updates. The resources they offer, such as support groups and educational materials, are top-notch. I am extremely grateful for the Tuberous Sclerosis Association and highly recommend their website to anyone seeking information and support.

M
1年以前

🌟 The Tuberous Sclerosis Association's website (tu...

🌟 The Tuberous Sclerosis Association's website (tuberous-sclerosis.org) is an invaluable resource for anyone affected by tuberous sclerosis. The content is informative and presented in a way that is easy to comprehend. The support groups offered provide a sense of community and have been instrumental in connecting individuals and families dealing with this condition. I highly recommend the Tuberous Sclerosis Association's website to anyone seeking information and support. 🙌

G
1年以前

👍 The Tuberous Sclerosis Association's website (tu...

👍 The Tuberous Sclerosis Association's website (tuberous-sclerosis.org) is an incredibly helpful resource for individuals and families impacted by tuberous sclerosis. They provide a wide range of information, from explanations about the condition to support options. The website is user-friendly and easy to navigate, ensuring that visitors can find the information they need quickly. I appreciate the Tuberous Sclerosis Association's dedication to raising awareness and providing support for those affected by this condition. Keep up the great work! 👏

J
1年以前

💙 I couldn't be more impressed with the Tuberous S...

💙 I couldn't be more impressed with the Tuberous Sclerosis Association's website (tuberous-sclerosis.org). Their dedication to supporting individuals and families affected by tuberous sclerosis is truly commendable. The website is a treasure trove of information, providing clear explanations and valuable resources. The support groups and educational materials they offer are vital in creating a supportive community. I'm grateful for the Tuberous Sclerosis Association's work and highly recommend their website to anyone seeking information and support. 💪

A
1年以前

I recently came across a fantastic resource for in...

I recently came across a fantastic resource for individuals and families dealing with tuberous sclerosis. The website tuberous-sclerosis.org provides a wealth of information, support, and resources that are invaluable for navigating this condition. I was impressed by the clear and concise explanations of tuberous sclerosis, its symptoms, treatment options, and ongoing research. The website also offers connections to support groups and educational materials, making it a one-stop-shop for anyone seeking information and support. I highly recommend visiting tuberous-sclerosis.org for anyone affected by this condition.

K
1年以前

I found a great resource for information and suppo...

I found a great resource for information and support related to tuberous sclerosis. The website tuberous-sclerosis.org provides comprehensive information on the condition and various resources available. It's a user-friendly platform that's easy to navigate and find relevant information. The support groups and educational materials provided are invaluable for individuals and families dealing with this condition. I highly recommend checking out tuberous-sclerosis.org if you or someone you know is affected by tuberous sclerosis.

关于Tuberous sclerosis association

结节性硬化症协会:为受 TSC 影响的个人和家庭提供支持和宣传

结节性硬化症协会 (TSA) 是一家总部位于英国的慈善机构,为受结节性硬化症 (TSC) 影响的个人和家庭提供支持、信息和宣传。 TSA 由一群父母于 1977 年创立,他们对自己的孩子被诊断出患有 TSC 时缺乏信息和支持感到沮丧。从那时起,TSA 已经发展成为一个由个人、家庭、医疗保健专业人员、研究人员和支持者组成的繁荣社区,他们致力于改善受这种罕见遗传病影响的人们的生活。

什么是结节性硬化症?

结节性硬化症 (TSC) 是一种罕见的遗传病,全世界约有 6,000 人中有 1 人患病。它会导致良性肿瘤在全身各个器官中生长,包括大脑、心脏、肾脏、肺、皮肤、眼睛和骨骼。这些肿瘤会根据其位置和大小引起各种症状。一些常见症状包括癫痫发作或癫痫;发育迟缓或智力障碍;行为问题;皮肤异常,如面部血管纤维瘤或鲨鱼皮斑块;肾脏问题,如囊肿或肿瘤;肺部问题,例如淋巴管平滑肌瘤病 (LAM);心脏横纹肌瘤;牙釉质坑。

虽然目前没有治愈 TSC 的方法,但有一些治疗方法可以帮助控制其症状。这些可能包括控制癫痫发作或行为问题的药物、切除肿瘤的手术或其他取决于个人需要的干预措施。

TSA 如何提供帮助?

TSA 为全英国的 TSC 患者及其家人提供重要的支持服务。这包括:

- 一条由训练有素的顾问组成的求助热线,他们可以提供有关与 TSC 一起生活的各个方面的信息
- 在线资源,包括概况介绍、时事通讯以及个人和家庭可以相互联系的论坛
- 定期开会以提供同伴支持和社交机会的区域支持小组
- 宣传服务,帮助 TSC 患者从医疗保健提供者、学校或其他组织获得所需的护理和支持
- 研究资金以促进我们对 TSC 的理解并开发新的治疗方法

TSA 还积极参与国家层面的宣传工作,以提高决策者、医疗保健专业人员和公众对 TSC 的认识。这包括游说为患有 TSC 的人更好地获得护理,促进对新疗法的研究,以及与其他组织合作以改善受罕见疾病影响的人的结果。

为什么选择 TSA?

受 TSC 影响的个人和家庭选择向 TSA 寻求支持的原因有很多。其中一些包括:

- 专业知识:TSA 提供支持服务已有 40 多年,这意味着我们对与 TSC 一起生活的各个方面都有丰富的知识。
- 社区:TSA 提供了一个热情的社区,个人可以在这里与了解他们正在经历的其他人联系。
- 宣传:TSA 致力于代表各级受 TSC 影响的人进行宣传——从个案到国家政策举措。
- 研究:TSA 资助对 TSC 新疗法的研究,以便我们可以继续改善受这种情况影响的人的结果。

结论

如果您或您所爱的人被诊断出患有结节性硬化症 (TSC),请知道您并不孤单。结节性硬化症协会在这里提供信息、支持、宣传和希望。当您带着这种罕见的遗传病度过一生时,我们敬业的顾问和活跃的社区随时为您服务。如果您想了解有关我们如何提供帮助的更多信息,请立即联系我们!

已翻译
Tuberous sclerosis association

Tuberous sclerosis association

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