Welcome
Hello and welcome to the Group(s)! We thank you for your interest.
Whether you want to learn about lymphedema self-management treatment options, get anecdotal advice from real people on coping with flare ups and symptoms, learn more about topics like surgery, or have questions on diet and exercise, our members are here to help get you started. If you are facing a lymphedema diagnosis, you are not alone. Learning more and connecting with others can be a source of support and comfort. You have reached this page because you have submitted a request to join one of the groups listed below, you are an existing member, or you are considering joining the group(s).
To date, we have over 10,000 group members across 3 FB groups. As with any organization, we have a few group guidelines and rules that keep our groups a safe place for our members. Read our Announcements and rules for more insight into our community. We are an ad and spam free environment unless part of scheduled collaboration events. That means “free services” too.
To collaborate with Lymphie Strong or reach the Admin team, send an email to info@lymphiestrong.com to get started. This includes polls, projects, campaigns, and general questions.
Group Descriptions
Lymphie Strong Support
Name: Official Lymphie Strong Inspiration Group for Lymphedema
Description: Here we discuss general lymphedema topics such as complete/complex decongestive therapy, manual lymphatic drainage, wrapping, symptoms, flare-ups, compression, surgery, and other day-to-day topics.
Lymphie Strong Fitness Club
Name: Lymphie Strong Running & Fitness Club for Lymphedema
Description: Home of the #MOVETHATLYMPH fitness challenges established in 2017. As of 2021, we have hosted 37 challenges for members around the global.
Focus on exercise and fitness along with virtual challenges. All fitness enthusiasts are welcome to include those interested in rebounding, swimming, water aerobics, Pilates, yoga, walking, hiking, diaphragmatic breathing, rowing, martial arts, golfing, strength training, cycling, paddling, vibration therapy, running, and so much more.
If you are currently in therapy for lymphedema and exercise is part of your CDT, you are also welcome to share!
Lymphie Strong Cafe
Name: Lymphie Strong Cafe (Lymphedema Food Support Group)
Description: Discussions around food, recipes, grocery shopping, dining out, beverages, and supplements are welcomed. We are not into diet wars though.
Our philosophy is that there is no single solution to eating with lymphedema, but we are here for support so that you have a safe place to talk to others with your same condition as you try to navigate and find a path that works for you. Some find success with a variety of different diet protocols and each person is different.
Overall, avoiding sugar, carbs, alcohol, processed food, and staying hydrated help tremendously. It is also important to keep a food journal and identify your own swelling triggers. We do host speakers and have collaboration events to help you stay motivated!
About Lymphie Strong Communities
VISION
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.
ENGAGEMENT
The groups as a community has been developed and established since 2015. As a member of any group(s), you are expected to follow a few basic guidelines and rules to help ensure that every member feels safe and comfortable engaging with others. The guidelines and rules may be refreshed and updated at any given time.
ATMOSPHERE
Your participation should be with respect, honesty, and in the spirit of supporting and learning from your fellow members. Comments should be in good taste and free of inappropriate language and/or any content promoting bigotry, racism or discrimination based on race, gender, religion, nationality, disability, sexual orientation, or age. Focus points include: positivism, advocacy, prevention, pro activeness, and camaraderie as voted by a member group poll.
DISCLAIMER
The ideas, suggestions, recommendations, and content of any group(s) are intended to be used for informational purposes only. No medical advice is being implied or rendered. There is no expressed guarantee of completeness or accuracy. Information posted does not substitute the relationship between you and your doctor or any other healthcare professionals; licensed or unlicensed. Before beginning any changes or modifications in nutrition, exercise, or medical treatment, consult with your personal licensed medical physician and obtain clearance to do so.
The opinions expressed in posts and comments here are solely those of the authors (aka original poster or commenter) or speakers. They do not necessarily reflect the opinions or views of Lymphie Strong, its Admins, or its collaborators or partners. Information changes over time and therefore opinions vary or may change without notice. No endorsement is being implied at any time.
Use of any information is done so at your own risk.
GUIDELINES
PUBLISHING CONTENT (Questions/Posts/Replies/Private Messages)
Anything published in the group(s) should be understood as being the views of that individual and does not represent the views of Lymphie Strong, its Admins, any other individual, patient group, or any other organization.
As a group member, you agree to publish information that is primarily drawn from your own personal experience and your own personal photos. You always maintain the option of deleting any content you have posted at any time.
POST APPROVAL
All Lymphie Strong groups are in Post-Approval mode. This means an Admin must review and approve your post before it is seen by the group at large.
WEBINARS
From time to time we will have guest speakers via Zoom or FB Live technology. This is by invitation only. 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. A formal event will be created. Their presentations will be their intellectual property. Any rebroadcast, duplication, or recording without their consent is strictly prohibited. Each session will remain posted according to the discretion of the speaker or company. Subscribe to the Lymphie Strong YouTube channel for the latest uploads.
MEMES AND LINKS
We do not allow memes and external links except from preapproved sources and members. Public links related to lymphedema news will be shared on the Lymphie Strong public page, not the private groups because the page has a share button.
RULES
We are as selective about what is shared in our groups as you are about your personal timeline. In the same way you may have your own timeline locked down, so are our groups. Keep in mind that we have thousands of members who have been part of our communities without issue for years.
Below is a list of general guidelines for sharing that are not approved in any group(s). You may be removed, muted, or blocked without warning for posting inappropriate publishing content.
INAPPROPRIATE CONTENT
EXTERNAL LINKS
REASONS
- We are not in control of content that those links may go to. As such, those links could be phishing links, links to misinformation, spamming links, watch parties, click bait, etc.
- The content may not be in line with the standards we have established for our groups.
- We do not allow self promotion and many times individuals will use the groups as a platform to promote their YouTube channels, conspiracy theories, their pages/groups, personal agendas, their personal politics, etc.
- If we allow some but not others, we are accused of favoritism and other “isms.”
- Spam is a major factor also especially with regard to fundraising. Fundraising makes some members very uncomfortable. If we allowed everyone to do it, the group feed would be overrun.
- When you are not in control of the original content, that content can disappear. For example, a member has shared content and for whatever reason, the original poster removes, edits or changes the audience that can view the content. Then we are left with a post in the group that shows, “Content not available” which again clutters the group feed.
The reasons are numerous and the problems associated with allowing external content outweighs the benefits for allowing it.
MEET UPS IN PERSON / ADDRESS OR MONEY EXCHANGES FOR DONATIONS OR BUYING
REASONS
Safety is a big concern online. Facebook has noted that criminal activities have stemmed from “meet ups” online. Some of these have been under the guise of exchanging items for sale or as a gift, or to become friends as neighbors. Please leave such activities outside the group. If something unexpected should happen, the entire group would be shutdown as a result. The risk outweighs the benefit of allowing these posts.
Effective May 2020, we no longer facilitate the exchange of donations for used items. See policy here.
As an exception, we do share invitations to conferences, symposiums, and other events in the lymphedema community. Those posts will originate from the Lymphie Strong page.
CROSS POSTING / SPAM
What is spam? – “Unsolicited messages sent over the Internet, typically to a large number of users, for the purposes of advertising,”
- Follow trains are not to be posted
- Any self-promotion or repeated self-promotion will be deleted.
- This includes your personal group, YouTube Channel, Instagram page, FB page, site, LE Clinic, DME business, or employer.
If you would like to share your sites, send a message to Lymphie Strong at info@lymphiestrong.com for a potential collaboration.
SOLICITING, SELLING, SURVEY, POLLS, QUESTIONNAIRES, IRRELEVANT TOPICS
- You may not solicit or sell anything in any form – survey, poll, request for personal message, or post questionnaires — for member personal information or photos for your research project, book, group, personal business, charity, or organization without prior consent.
- Self GoFundMe campaigns are not allowed including links embedded within videos, articles, or blog posts.
- FB bots monitor groups for the sale of contraband and trafficking of all types.
- Surveys from Academic institutions or student research projects must be IRB compliant. An email with your advisor on the cc stating that the survey data can be collected from Facebook must be sent.
If you would like to discuss your project or survey, please email Lymphie Strong at info@lymphistrong.com.
POSTING PHOTOS/CONTENT WHEN THEY DON’T BELONG TO YOU
For the safety of members, do not re-post content from within the group and post it elsewhere. This includes screenshots.
POSTING PHOTOS FOR CLICK BAIT
What is click bait? “(on the internet) content whose main purpose is to attract attention and encourage visitors to click on a link to a particular web page.” This normally happens when someone is selling a t-shirt, shoes, or other items from their website.
MEMES
Memes trigger different emotional responses from different members, even self deprecating humor. In a group with thousands of members, while a few may laugh or empathize, an entirely different set could become angry or feel they are targeted in some way.
There are groups completely dedicated to memes, so we don’t feel that they are needed.
EXTERNAL GROUPS
Strictly no sharing of other groups posts or photos within the group(s), especially if they are CLOSED.
MULTI LEVEL MARKETING
What is ‘Multi-Level Marketing’? – “Multi-level marketing is a strategy that some direct sales companies use to encourage their existing distributors to recruit new distributors by paying the existing distributors a percentage of their recruits’ sales; the recruits are known as a distributor’s “downline.” All distributors also make money through direct sales of products to customers.”
- MLM product plugging, solicitation, or events are not allowed and will be deleted. This creates tension with competing products and sellers which is counterproductive to the focus of lymphedema management.
PRIVATE MESSAGING ABUSE
What is private messaging abuse? Private messages should not be used to:
- Send unsolicited messages to promote your business or otherwise sell
- Send unsolicited messages requesting donations for your GoFundMe
- Contact members who have explicitly asked you not to contact them
- Contact members to “hit on” members or use the feature as a dating service
- Attack, berate, belittle, insult, harass, threaten, troll, bully, or swear at fellow members or their views
What should I do if someone is bothering me in messages on Facebook?
TROLL / TROLLING / THREATS / NAME- CALLING / OBSCENTIIES
What is a troll? “To act as a troll” means to “a : to antagonize (others) online by deliberately posting inflammatory, irrelevant, or offensive comments or other disruptive content.”
- Any post worded in a way to specifically cause tension or threaten a specific person or group will be deleted.
- If the Admin/Moderator(s) need to delete two of your posts because they felt that they were created specifically to “stir the pot”, you will be removed from the group without notice and blocked.
If any of the above rules are violated, please flag the post – How do I report something i see in a group?
LEAVING GROUP
You always maintain the option of leaving the group. If you do not agree with the terms of group membership, leave at any time; otherwise your membership constitutes your agreement.
Thank you for your cooperation.
