19 posts tagged “PF”

Creating communities, on and off PatientsLikeMe

Posted November 28th, 2017 by

More than half a million members, connecting 365 days a year, sharing countless health insights and words of support. Communities like this one are built on communication. And every day, patients like you are finding new ways to connect and enrich your community.

From in-person meet-ups to live-streaming support groups and off topic threads, patients like you are finding creative ways to build communities. Check out some of the ways connections are growing in and out of the forum.

Taking it offline

What started as a simple chat between friends in the forum evolved into something much bigger. Members from the multiple myeloma community on PatientsLikeMe decided to take their friendship out of the forums and into real life. Marcia (marcia_holman), Dennis (DennisIvan), Paul (paulatsea) and Lee (Dapylil), along with spouses and grandchildren, got together and discussed life with multiple myeloma, their “new normal” and shared the highs and lows of the journey together.

In Marcia’s words: “It has been a delight to get together and meet someone you have just been corresponding with on line. We can put a face to them. You get to know their personalities and they become “forever friends!” Check out the full story.

 

Connecting to transform lives

When Nola, living with progressive MS, was having trouble making her bathroom handicap accessible, Gary decided to jump in and help. He used his connections at Home Depot (where he worked) to help Nola regain her independence, her ability to clean herself, and most importantly, her dignity. Check out photos of her remodeled, handicap accessible bathroom and rest of their story on the blog.

 

Meeting members where they are

Earlier this year, John started a Facebook group to live-stream pulmonary fibrosis (PF) support group meetings and conferences. His hope is that the group “can help with the feelings of isolation and loneliness, plus provide valuable information and hope for the future.”

Unwinding in off-topic threads

Members use off-topic threads to play games, celebrate life and each other, and to take a break from the stress of living with a chronic illness. Here’s a few popular threads:

  • A thread to celebrate us! Going strong since 2010, this thread was created as a “happy place” for MS members looking for positivity and support.
  • In the Parkinson’s disease forum, members have swapped lots of jokes and pics of their artwork for almost a decade.
  • Members of the mental health community have kept their “Three word story” thread going strong for seven years, and shared their “Goals for today” with each other for even longer.
  • Potpourri” and reading recommendation threads in the ALS forum have been go-to places to share about non-ALS stuff.

Are you part of the PatientsLikeMe community? Join to add your voice and create your own community.

 

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PF Awareness Month

Posted September 13th, 2017 by

September is Pulmonary Fibrosis Awareness Month, and in honor of that, we’re rounding up what members of the PatientsLikeMe community have shared about pulmonary fibrosis on our blog.

First off, for those who don’t know – what is pulmonary fibrosis (PF)? It’s a chronic, progressive scarring or thickening of the lungs, which makes it difficult for oxygen to transfer from your lungs into your bloodstream. It may be caused by certain medications, environmental exposures or underlying diseases of the autoimmune system (such as rheumatoid arthritislupus or scleroderma). Idiopathic pulmonary fibrosis (IPF), the cause of which is still unknown, is the type of PF most people might’ve heard of, but there are many other forms of PF, such as sarcoidosis and cryptogenic organizing pneumonia.

Now let’s take a look back at some blog posts about PF.

  • In 2013, member Ian shared about his journey from having “stiff lungs” and getting diagnosed with IPF to undergoing a lung transplant. “I was bloody determined to have a transplant,” he said. Read more here.
  • In 2014, member John_R discussed his adjustment to his “new normal” of living with IPF and using supplemental oxygen. “My oxygen use was quickly accepted at work,” he said. “There were a couple of double takes when people who did not know I was going on O2 saw me for the first time. A quick smile from me was returned and all was back to normal.” Check out more of his story.
  • Also in 2014, member Barbara opened up about her IPF diagnosis story and being her own healthcare advocate. “I know that the road to diagnosis is often long and complex with not all the piece of information presenting at the same time – seldom with one test or series of tests taken at one point in time,” she said. Hear more about Barbara’s experiences.
  • In September 2014, we shared a video to raise awareness of PF featuring member Bryan. He was an inaugural member of our Team of Advisors who believed in the importance of sharing about his experiences with IPF. Sadly, Bryan died in 2014. His memory and data live on.
  • Last year, member Glenda joined the 2016-2017 Team of Advisors and shared about the uncertainty of living with IPF and what she has gained from the community: “PatientsLikeMe became my lifeline to information and patients who knew what I wanted and needed to know.” Meet Glenda here.

Explore all our past blog posts about PF. Are you living with pulmonary fibrosis? Join the community today to meet other patients like you.

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