Using social media to connect, share, and support patients living with vasculitis and their families.
The Vasculitis Foundation strives to connect our community to share knowledge, experiences and to offer encouragement to each other. Our patients and families have shared their experiences through our Vasculitis Stories Project. The responses were thoughtful and wide-ranging, proving that vasculitis impacts everyone in its own way. The chapter and support groups offer our members the opportunity to meet in-person to learn about vasculitis and share stories. To broaden our community of support, we are posting questions on our social media sites to encourage patients to connect, share, and support one another.
Our first Monday question was a great success! Please feel free to look through our Monday question and the responses we collected. Next Monday, look for our question and join the conversation!
Monday, December 15, 2014:
Question: We know many patients with vasculitis struggle with fatigue. Do you have a strategy or tips for other patients on how to manage fatigue – especially with the holidays and all the year-end activities?
Read the responses from you, the experts! Click here for suggestions to battle fatigue.
Monday, December 22, 2014:
Question: Do you have any suggestions for other patients on how to have a healthier 2015?
Read the responses from you, the experts! Click here for suggestions for a healthier 2015.
Monday, December 29, 2014:
Question: As many of us consider ways to get organized in 2015, we think the following question suggested by Sandy is perfect for the group: I’d love ideas on how others keep their medications identified (so many look so similar), and what tips they have on organizing and keeping track of all their daily doses.
Read the responses from you, the experts! Click here for suggestions for organizing your medicines.
Monday, January 5, 2015:
Question: Being diagnosed with vasculitis brings many challenges and patients often tell us they don’t know how to explain the diagnosis because “no one has ever heard of it”. How do YOU describe your disease diagnosis/experience with others (your family, friends, co-workers, dentist, ophthalmologist, etc.)?
Read the responses from you, the experts! Click here for suggestions for describing your diagnosis.
Monday, January 12, 2015:
Question: One of the goals of the V-PPRN.org is to conduct research to learn how we can improve diagnostic times of patients with vasculitis. Today’s question is an informal survey: How many physicians did you see before your vasculitis diagnosis? How long did it take to get diagnosed? What form of vasculitis were you diagnosed with?
Read the responses from you, the experts! Click here for the results of our informal survey on diagnostic times.