The #PTEN community (on Twitter) is for persons living with Cowden Syndrome (or any PTEN mutation) and is a patient-run community not owned by any organization or entity.
If you are new to Twitter or need help with the “tweet chat” process, here are some easy steps on how to get started:
- Register for a Twitter account. If you have a Facebook account, you can find your way around Twitter. Do not let it scare you.
- Stay logged in to Twitter… then (open another tab on your browser) and visit TChat.io or Tweetchat.com
- In the box in the middle of the home page is an area to enter a “hashtag.” (Find out what a hashtag is.) The hashtag for our chats will be #PTEN (because in Twitter-speak, the shorter the hashtag, the better.) Then click “Start Chatting.”
- The #PTEN tweet chat page will load and you will see all tweets where a Twitter user used the #PTEN hashtag. (This is what we want to happen!)
- The page will automatically refresh itself every few seconds to load more tweets.
- When you are ready to take part in the tweet chat you must click the “Sign in” button in the upper-right corner of the page. It will then want to link your Twitter account to the their website. This is safe to do! Click “Authorize app.”
- Once you are logged in there will be a box at the top of the page where you can enter your message (tweet). This box will automatically add the #PTEN hashtag for you.
NOTE: Thank you very much to the #BTSM Community for sharing these steps with us!
I have no idea how I missed this till now. Thank you
I have been asking for your e-mail for several weeks. Hope you’re OK?
I have not been feeling that great. But doctors appointments start up again.
Hope you get my e-mails and can join the PTEN chat this month?
I will try
Anyone diagnosed with LDD
I have LDD. Do you also?
My husband was diagnosed a month ago. They removed a being 8.3 tumor. We are now back in the hospital exactly 4 weeks after with naseau, rejection of food, dizziness and they have done ct/MRI/MRV and they cannot figured it out. He never had these symptoms or headaches, now he does but no headaches. Did you have surgery and how are things after the surgery?
Mine was 5 cm. I had no symptoms right up until the surgery. If you want to e-mail me directly (under CONTACT) I would love to talk further. This blog was started the day after I was diagnosed with LDD.
How do I email you don’t know how. we are in
Mount Sinai Hospital.