Townes-Brocks Syndrome - International Support Group

Below is a brief explanation of how different areas without our TBS Group Directory works and I would like to share them with you as is done with the group members. Sometimes we can search so hard for so long but articles put out by different organisations that are meant to be shared but can't be found. Here's a few topics and entries of what I found information on and have given to the members, you should read them too, well if you join, you are more than welcome to read up on the subjects -

Directory

• Link Us

• Articles
The articles I have collected and show in the support group members area are gathered and grouped together into different topics and subjects. I enjoy reading and have found many lovely articles. If you would like to become a member of our group please join as we would value your comments regarding the articles.
• TBS Specific Terminology
Have you ever started to read an article and then found yourself scratching your head, one of your eyeballs decides to relocate the angle of vision and take in a different view, and you ultimately lose concentration on the article totally? Me too ! Whenever there are 'big' words, and 'specific' terms relating to the topic that I don't understand - thats when it all happens. I lose interest. TBS is a syndrome and naturally there are many terms that are raised that quite commonly are not understood, causing so much confusion. In our little group library I have put a TBS medical terminology definition to help out. Its quite interesting - some of the words really don't look that scarey when they are explained. Join us and you will learn so much more about - 'those' words.
• Medical Terminology
Have you ever visited a doctor's surgery, waiting patiently - and I mean patiently for hours to have your 5 minute turn in the chair sitting looking at them. I have found myself in the past sitting in a chair nodding my head as the doctor quite happily explains the condition to me. In sheer delight the doctor smiles at me, realising that I have not butted in, therefore coming to the conclusion that they have found someone to talk to that understands the sheer jibber that comes from their mouth. Such a pleasing experience isn't it. I walk out wondering what in the blazes was just accomplished by paying such a large amount of money to be a part of the entertainment experience. I decided it was a must, as I was sure I was not the only one, to start a medical terminology jargon segment. It got too hard, so I have linked to others who have made the same sacrifice with their time, only to turn around and obviously feel strongly enough to start their own jargon directory. Join our group to share in the experience of finding some answers to what those 'funny' words mean.
• Recommended Reads
I love it when I find interesting facts and features. This takes in a whole field of subjects and topics. Recommending a read can be a very serious task. I don't want you to waste your time reading rubbish, so these reads are the ones I really do suggest you read. Whether its a TBS specific, or a computer specific, or even a nice story specific - you will find it is a really good read on that topic. Please come and join us and use the internet in a healthy way. There is such a wealth of knowledge out there in cyberspace to find and share. Come check them out. Recommended reads are what I feel are appropriate good reading.
• Recommended Groups and Links
Now these are recommended websites and other groups that we can work together and share information for the good of the member. I have been so lucky to find a few websites that are set up with a common trend. That commonality is to help people. It doesn't have to cost and they also believe this. Its a way of reaching out to share and let someone know that you care about them. These sites and links are truly wonderful places to go and check out. We can have a symptom, but it can be a symptom that we live with that others also have the same problem, or reaction to. By looking outside the square we find TBS symptoms are common in ways that other people can without have TBS have similar problems. So now lets look at the symptom and work on all the things out there that we can use to cope with our symtoms. Join up and join in our search for a more comfortable life ahead.
• Research
Such a slow painstaking and patient journey isn't it. Researchers around the world take time to test, validate and confirm and modify, change and retest, reevaluate and check. Aren't we glad we are not these people. What a job ! Looking for needles in a haystack. Well a long time ago a group of people got together and decided that if their group could help the researchers find answers we would. We continue to give them a hand by posting in our thoughts and stories in hope that it will just 'trigger' something. If it helps research, it will help the future kids. Its a wonderful thing to be a part of so come in and join us support the children of the future.
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