When you recently were diagnosed or even when you have been living with Pulmonary Fibrosis for a while it’s easy to just shut down. Connecting with family, friends and even other patients is harder because something was taken away and they may be holding off a bit. The opportunities to speak with somebody are sometimes more difficult because of the unbelief, misunderstandings, fears or even practical reasons like: distance. The need for comforting words, stories or new information is so important because it’s your way to express your thoughts, ideas and feelings.

There are many ways to connect to the people you care about or who care about you. Whether through a phone, fax, email, letter, website, social networking websites (Facebook, Twitter, Skype, Google+) you are able to connect with people from all over the US, even all over the world. Love can be expressed, thoughts can be shared, ideas can be created and actions can be taken.

Without letting people know who you are, where you are, you can feel isolated.  Let people find you. There are more than 200,000 pulmonary fibrosis patients in the US only, yet on all the websites, internet support groups and local support groups only a few thousand are active.

That’s wrong because with all the great efforts of the Coalition for Pulmonary Fibrosis and the Pulmonary Fibrosis Foundation to put this disease in the limelight it always comes down to numbers. Not the numbers they talk about but the number of patients that are heard throughout the US.

The most important Social Networks:

1. Facebook
2. Twitter

Direct live internet communication:

1. Skype
2. Google Plus

1. FACEBOOK        

Facebook101 - A simple guide to understanding when / how to use basic features

On Search Engine Land, Greg Finn breaks down the different aspects of Facebook such as Profiles, Groups, Pages, Places, and Events.

Setting up your Facebook Account

Facebook-tutorials: How to create a Facebook profile 

All Facebook walks you through the basic steps to create your Facebook Account. Some of the screen shots are out of date, but that’s to be expected … you will have to get used to Facebook changing its screens every couple of weeks.

IPF Today

https://www.facebook.com/#!/IPFToday

PF Warrior Community 

https://www.facebook.com/pfwarrior?fref=ts 

Pulmonary Fibrosis Awareness

https://www.facebook.com/#!/groups/2233383655/

Pulmonary Fibrosis Foundation

https://www.facebook.com/PulmonaryFibrosisFoundation

Interstitial Lung Disease 

https://www.facebook.com/#!/groups/ildfreshair/

There are many more groups and you can access them by just typing in Pulmonary Fibrosis and selecting the group you want to be part of.

2. TWITTER

What is Twitter and How to Tweet your Messages 

Come back soon



3. SKYPE

Choosing your name is the most important thing.

For people who are new to Skype choose a easy Skype name. If you want a additional Skype name (introducing you to other pulmonary fibrosis patients) and may be looking for other patients it’s preferable to have a (second) Skype name that everybody can find easily. (it make take some time for this formula to catch on) We suggest the following to make it easy, find patients in your state and identify you.

                         pf.state.first name  -  (sample pf.virginia.peter)

1. If you search pf it may show you all the patients in the future.
2. Search pf.virginia and hopefully only the patients in Virginia will show up.
3. If you know anybody with their first name and state and you can look them up swiftly.
4. Your own real name will be on the screen (not your skype name)

How to install Skype (source: Skype)

Go to www.Skype.com and under the button Get Skype choose Windows, Mac etc you're working on. After that it's simple:

Top FAQs

• I’ve forgotten my password...
  
• How can I change my privacy settings?
  
• Can I make video calls on Facebook?
  
• What is an Online Number?
  
• Why can't I sign in to Skype?
  
• How do subscriptions work?
  
• How can I pay for Skype products?
  
• Why isn't my subscription working?
  

How-to guides

• Calling someone who's on Skype
  
• Calling phones and mobiles
  
• Making a conference call
  
• Making a video call
  
• Making a group video call
  
• Sending instant messages
  
• Solving call quality issues
  

4. GOOGLE PLUS







DISCLAIMER:The information provided in this site is for educational purposes only, and it is not intended nor implied to be a substitute for professional medical advice. Always consult your own physician or health care provider with any questions you may have regarding a medical condition.

"Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma -- which is living with the results of other people's thinking. Don't let the noise of others' opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become.Everything else is secondary."

Steve Jobs

The way we communicate with others and with ourselves ultimately determines the quality of our lives

Anthony Robbins