Knowledge is power and the lipedema community is one of the most communicative I know. Hundreds of those affected exchange ideas every day, share experiences and ask questions. Unfortunately, these findings get lost in the comments and it is difficult to maintain an overview here.
LOPI stands for Lipedema Online Pring Iinitiative. The online survey portal offers an opportunity to collect and illustrate experiences and data from voluntarily affected persons. In this way new knowledge can be gained or assumptions can be substantiated. That means the more people get involved in this project, the clearer the results we will all get.
How does LOPI work?
You register via the Registration Form to which you will be sent a code that you enter in every survey in order to be able to participate anonymously. Don't worry, your names and email addresses will be handled independently of this code.
The first basic questionnaire deals with the most important data about yourself, which is then incorporated into the database at the end and illustrated in diagrams. Only participants can see these results. The surveys should be limited to 1–2 per month, so you don't have to worry about receiving too many emails.
We ask for ideas and requests for further surveys. So Sabrina (email@example.com) likes to write if you have a burning issue. All participants vote on the next topic. These are already being planned:
- Lipedema operations: yes or no? Where, who, why, costs, improvement
- Lipedema and eating disorder
- Lipedema and other diseases
- Compression: what, how, where?
- Lipedema over time
What are the benefits of the online panel?
The results of the surveys can help you make decisions, get information more quickly and lay the foundation for an important database. Only together are we strong and should use every opportunity to work for more answers, attention and progress.
Get involved, take the 10 minutes for the first questionnaire and take a look. If you like the portal, please recommend it to others!
sabrina, the founder of the portal, has suffered from lipedema herself since puberty and has tried to collect as much knowledge as possible about this disease since her diagnosis. She works in market research and naturally brings the perfect wealth of experience for this initiative with her.