Welcome to The Patient Experience – a new kind of patient forum

The Patient Experience is a set of discussion forums where patients connect, express their views and share valuable experiences on the subjects of medicine and healthcare. The forums are FREE and open to all.

The forums allow you to interact with other people in your situation and share information and experiences. Thus helping you on your journey through your or a loved one’s medical problems and challenges.

By sharing your story and learning from others The Patient Experience will provide a safe and place to help on the path to wellness.

The service is brought to you by The Patients Voice - a research community dedicated to healthcare and medical information. If you would like to participate in surveys and other kinds of confidential and anonymous research please click here for more information.

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Ataxia Telangiectasia Blog

The Patients Voice is running a research blog into the impact of Ataxia Telangiectasia patients and their caregivers.  It would be really great if you could share your story with us and comment on the experiences of others, if you can.

According to Wikipedia, Ataxia-telangiectasia (AT) (Boder-Sedgwick syndrome or Louis-Bar syndrome) is a rare, neurodegenerative, inherited disease which affects many parts of the body and causes severe disability. Ataxia refers to poor coordination and telangiectasia to small dilated blood vessels, both of which are hallmarks of the disease.

Ataxia Telangiectasia affects the cerebellum and also weakens the immune system in about 70% of the cases, leading to respiratory disorders and increased risk of cancer. It first appears in early childhood with symptoms such as lack of balance, slurred speech, and increased infections. Because all children at this age take time to develop good walking skills, coherent speech, and an effective immune system, it may be some years before Ataxia Telangiectasia is properly diagnosed.

In particular we are interested in the following questions:

  • What age were you/your child diaganosed?
  • What were the first symptoms?
  • Were you/your child misdiagnosed?
  • What treatments/medications help you/your child?
  • What role does therapy play?
These questions are only a guide and so, please, feel free to bring up any other issues that you consider as relevant to you.  Thanks very much in advance for your help. Remember, a blog is really like having a conversation with lots of people at the same time and so please check back on the blog to see what others have said so that if you would like to add to their thoughts you can.

To take part, all you need to do is scroll down to the comments area, type in a nickname of your choice and then put your comments into the box. We look forward to reading your comments and, of course, thank you very much for your input. Finally can I ask you to bear in mind when you blog that your comments will not just be read by other bloggers and The Patients Voice staff.
  If you have any question please feel free to get in touch

Best wishes
 Belinda

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