For the past several months, I have been receiving some great feedback on the success of the online support groups I manage on Facebook, particularly from physical therapists in The Official Lymphie Strong Inspiration Group. It never occurred to me that a certified lymphedema therapist might need a group to recommend to their patients. I received this important feedback at the LE&RN CA Walk in June, and I have been thinking about ways to help ever since.
The Official Lymphie Strong Inspiration Group
My groups were created as an extension of this blog to provide a haven for members to talk about their personal experience in living with lymphedema in a closed setting, but also talk about positive steps we can take to manage on a daily basis.
For the past three years we have been using theme days posted by me which are aligned to goal setting using the gold standard of CDT – manual lymphatic drainage, wrapping and compression, exercise, diet, skincare, etc. Other topics such as surgery are discussed. We also celebrate successes however big or small. The constant word I hear when people write me about the group is that they feel EMPOWERED after a few short months. Focus points include positivism, advocacy, prevention, pro active ness, and camaraderie as voted by a member group poll.
There are so many people who live in rural areas or in places with little to no support in terms of lymphedema. This group is aimed at helping to close that gap in finding information.
To join these groups, you must answer the questionnaire. Here is the link to the Group Guidelines & Rules.
The Lymphedema Running & Fitness Club
A spinoff group from the main group is our fitness group. With the help of Juzo USA, the #MOVETHATLYMPH Challenge Series has taken off with great success. This year we planned 6 events with a total of three 60 Day Challenges and three Virtual 5Ks.
Next year Juzo will sponsor our challenges for the 3rd year in a row. We are so incredibly proud of our members and worldwide participation.
For feedback on how this is helping our members visit the following post on the 2018 #MOVETHATLYMPH Summer Fun 60 Day Challenge.
The Next Level
As of this morning’s Facebook Live in the group, I have announced the new vision that I have for the groups, and my decision to take it to the next level.
A safe, quality online lymphedema support group for patients, caregivers, and therapists which closely aligns with an in-person support group as much as possible. Where members engage with respect and honesty free from ads, spam, and other online distractions not previously approved or part of scheduled collaboration events.
“The best teamwork comes from people who are working independently toward one goal in unison.”
Meet the Lymphie Strong Volunteer Team:
- Pernille – Official Lymphie Strong Inspiration Group
- Judith/Brenda – The Lymphedema Running & Fitness Club
- Jennifer – The Lymphedema Table
These ladies work voluntarily with me as Moderators to ensure our groups are aligned with healthy Lymphedema management goals, support, positivity, and camaraderie. Please join me in welcoming them to the team.
The next step is to develop a speaker schedule using video or FB Live technology. I will ask my friends across the world in the Lymphedema community to speak on various topics, just as they would at an in-person support group settings.
We will schedule these events as their availability allows and in consideration of their time zone. Their presentations will be their intellectual property. Any rebroadcast, duplication, or recording without their consent is prohibited. Each session will remain posted according to the discretion of the speaker or company.
This past month we had a successful FB Live Presentation on Compression & The Science Behind Why We Wear It by Jobst USA. Jobst has generously decided to continue this collaboration with me and the Lymphie Strong community.
Our next presentation will most likely be in October. Stay tuned for the topic!
Lymphatic Education & Research Network
I voluntarily serve as Texas Co-Chair for LE&RN and Mondays will be #LERNMonday. I have obtained commitment from some of my fellow Co-Chairs across the globe to give updates on their events and what is going on in their communities.
Today I kicked it off with a Texas update. California, Massachusetts, and New York will be upcoming soon. This is a way to connect with other advocates and activists in your area. If you would like to create a chapter in your area, please contact LE&RN.
The Lymphedema Treatment Act
The Lymphedema Treatment Act is an important bill for all of us in the US and an advocacy which aligns with LE&RN’s recent #DCLobbyDays. Fridays in the group will be #LTAFriday. Again, I will ask the Lymphedema Advocacy Group across the country to tell their personal story and share how you can get involved in this important landmark legislation for all of us with lymphatic disease.
For more information on how to get involved, please watch this short yet concise video. It is fantastic! Source: LTA
I have lined up at least two other speakers on topics from some interesting people in the community, and I think that you will be very excited to hear from them!
Again, to join the group, visit https://www.facebook.com/groups/LymphieStrongInspirationGroup on Facebook and answer the questionnaire.
Looking forward to these exciting upcoming events!
Please drop your comments below.
Wishing you great lymphatic health,