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.
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?
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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
We run a number of research project with patients each year and if you would be interested in taking part in these kinds of projects or any other medical or healthcare market research why not join us at The Patients Voice by clicking the button below.
