|
亲爱的主内弟兄姊妹：
大家好！我是一个罕见病孩子的父亲，我孩子得了一种非常罕见的疾病，医学名叫《结节性硬化症》，在网上可以找到该病的资料。这种病目前在全世界都没有药和方法治，国内也没有组织来关心和关注这个群体，我的一个朋友在美国的一个此病的网站上帮我找了一些资料，我想求英文水平高的弟兄姊妹帮我翻译一下，最好是学医的，我替我的孩子感谢您！！我的邮箱：CXJCSL@163.COM
NEWLY DIAGNOSED WITH TUBEROUS SCLEROSIS COMPLEX (TSC)?
The Tuberous Sclerosis?Alliance is Here to Help . . .
You just received the diagnosis of tuberous sclerosis complex or TSC.? Your next question may be -- now what??? The Tuberous Sclerosis Alliance (TS Alliance) is here to assist you, to offer you hope, to provide information and to direct you to resources that may be helpful to you in your journey, whether you are 50 years old or your child is?5 days old.?
The first thing to understand is that TSC is a very complex disease that can be very overwhelming.? Try to focus on the issues affecting your life right now.
Remember:? TSC affects all individuals differently, so what you might read about one person and how TSC impacts?his or her?life may be?quite different from how it impacts your life.?
Another thing to remember is that different aspects of TSC affect an individual’s life at different times.? For example, you may be concerned about the heart tumors in a newborn baby who has just been diagnosed with TSC, but a person in?his or her?40s may only need to be concerned about the kidney tumors.?
What Is TSC? is?a good place to begin learning about the basics of the disorder.? The booklet, In Their Own Words:?Personal Journeys with TSC, features first-person stories about children and adults living with TSC.?
In addition, this website is packed full of information so spend some time browsing the different sections or use the Search function on the top right of each web page.? For example, our Information Sheets section includes articles on a variety of issues related to TSC and an eMedicine article on the disorder.
The TS Alliance is here to support you every step of the way and in any?manner?we can.? But remember:
“It is reported that more than 90% of what we worry about never happens.? That means that our negative worries have less than a 10% chance of being correct.”??-- Susan Jeffers
Immediate Support:? Director of Advocacy and Education
For those needing?instant help, the TS Alliance employs a full-time staff member?who offers a wide range of support.? Dena Hook, Director of Advocacy and Education, is available to answer any questions you may have and to provide you with resources and information.? If you have questions or concerns, call Dena at 1-800-225-6872 or 301-562-9890 or email her at dhook@tsalliance.org.
Local Support:? Community Alliances?
The TS Alliance provides you with many resources so you do not have to face this alone.? We sponsor more than 30 volunteer branches of the TS Alliance called Community Alliances throughout the USA.?
These Community Alliances provide opportunities to get involved on the local level and to meet and interact with other individuals with TSC and their families.? Community Alliances extend a hand to families and individuals in their local area and make available expert speakers who discuss everything from dermatological treatments, to horseback riding therapy, to the latest research on treatments for kidney involvement.?
Community Alliances are paving the way for the future and bringing the TS Alliance closer to those affected by TSC.??Click here?to find a Community Alliance near you.?
Peer Support:? Matching Program & Support Network?
The TS Alliance Matching Program is a volunteer network designed to match individuals and/or families from across the country with others who are experiencing the same or similar challenges. The goal of this program is to link people who can provide experience-based information and support to each other.?
The Matching Program provides peer support that may not be available in the community.? When you register with the Matching Program your information will be used only for the purpose of the program.?? To access the Matching Program, contact Dena Hook at dhook@tsalliance.org.?
The Tuberous Sclerosis Alliance Support Network is an organized partnership of individuals whose lives have been affected by TSC. These volunteers are committed to offering support and sharing their experiences with others who are faced with the challenges of TSC. Across the nation, the Support Network is providing the latest medical information, education and support to those individuals who are seeking understanding about the disorder and offering them words of encouragement and empowerment.
Volunteers come to the network with a wealth of knowledge, awareness and experiences that they are willing to share with others who are often stunned when they first hear the words, “You or your loved one has tuberous sclerosis complex.”??If you are interested connecting with an individual in your local community, contact Dena Hook at dhook@tsalliance.org.?
Online Support:? Discussion Groups & Social Networking Sites?
The TS Alliance sponsors a variety of Online Discussion Groups, which provide?private forums for everyone affected by TSC to share their challenges and triumphs and get connected with others all around the world who have similar experiences.? The TS Alliance currently offers the following discussion groups:
· Adults with TSC?
· Grandparents of TSC children?
· Teens living with TSC?
· Parents, caregivers and others affected by TSC
To join a discussion?group, simply email?Dena Hook at dhook@tsalliance.org.
You can also connect to others online via several Social Networking Sites maintained by the TS Alliance, including FaceBook, MySpace, YouTube and Twitter.
Medical Support:? TSC Clinics
The TS Alliance recognizes 25 medical practices in the United States as TSC Clinics, each one directed by a physician who is a member of the TS Alliance Professional Advisory Board and knowledgeable about TSC.?
TSC Clinics provide access to other board-certified physicians and allied health care professionals with experience caring for individuals with TSC.? To locate a TSC Clinic near you, click here.?
Some clinics are located in a children’s hospital and are unable to provide services to individuals over 18 years old.? Please contact Dena Hook at 1-800-225-6872 or?301-562-9890 or email her at dhook@tsalliance.org if you are an adult with TSC who needs help locating an adult specialist in your area.
The TS Alliance Will Always Support You . . .
The TS Alliance is just that: an alliance -- of those who have the disease, of those who have a family member or friend with the disease, of those who are caring for or treating?someone with TSC, of those who are trying to find new treatments and a cure.? Simply put, the TS Alliance is powered by people -- people from all walks of life, people from all over the country, people just like you.?
The journey of TSC can certainly be daunting; many people say having TSC is like walking through a minefield, because you never know when another symptom will arise.??But you can rest assured the TS Alliance and our volunteers will always be available when you need information, support or just a sympathetic ear.?
这里是美国TSC的网站，可以供翻译人员参考：http://www.tsalliance.org/index.aspx
[此贴子已经被愤怒的刺猬于2009-11-15 20:22:25编辑过]
| 
|小黑屋|手机版|奉献支持|恩友之光
( 桂ICP备2023005629号-1 )
雷达卡
发表于 2009-11-15 19:56
沉默卡
变色卡
显身卡
发表于 2009-11-15 20:29
发表于 2009-11-16 00:00
楼主