Looking for community? Want to share your experience? Need a place to find answers?
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Create a savvy and supportive lymphedema community, led by a certified lymphedema therapist, where education, help, and resources can be accessed.
Patients frequently comment on how hard it is to find a therapist or that no one told them about lymphedema. I wondered what questions people were asking on a larger geographic scale and if were they finding help. In June 2020, I began searching for online resources for people with lymphedema and other swelling conditions.
What I found
I came across blogs and websites. Some seemed abandoned by founders or lacked engagement. YouTube videos and books were spotted, but how could viewers know whether information was accurate? A few organizations existed but seemed geared more towards medical professionals or lacked an engaging platform for people to routinely congregate and socialize (i.e. community). Facebook groups existed where people with lymphedema met to find answers and share a sense of community (one doubled in size from 4,000+ members to 8,000+). However, there was little to no involvement by medical professionals trained in treating lymphedema. These findings demonstrated a huge need for people to relate to others who shared a similar experience and a place to find trusted resources and answers.
In one particular group, I was spending several hours reading, replying to and referring others to resources. But I still had a business to run and patients with needs to attend to. Another problem: People were asking the same questions others had asked earlier. I began to think of a solution to the repetition. I started writing and compiling content, seeking more input, investigating collaborative opportunities with other professionals, and learning the back end of a virtual offering.
Finding community and trusted content
Subsequent months involved developing a vision to meet needs while still being able to balance work and finances, investigating the infrastructure that would make this vision user-friendly and efficient, consulting legal guidance and more. After nearly two years of research and strategizing, I came up with an idea: A Membership Platform. My intention is to expand internationally, helping everyone who needs help find resources by
Creating a savvy and supportive lymphedema community, led by a certified lymphedema therapist, where education, help, and resources can be accessed.
Details are being finalized with plans to launch in 2022. If you would like to be a part of the development and stay informed about opening registration, click here.