I recently had the pleasure of joining Don-Ellen Ray and her producer, Phil, on their wonderful new podcast, The Lipedema Link.
Like me, Don-Ellen also has Lipedema and we talked for over an hour about this chronic and progressive condition, and ways we can slow the progression, feel stronger in our bodies, and the importance of finding others like us to make the journey a little easier.
I want to thank Don-Ellen and Phil. The stories they bring are reaching people who need to know about Lipedema, so they can be diagnosed sooner, and begin treatments in an earlier stage to hopefully prevent them progressing to later stages like I was when I was diagnosed, back in 2007 at a stage 3 Lipolymphedema.
If you think you may have Lipedema and want to join the Lipedema Fitness support group, and join a community of others who understand what you are dealing with on a daily basis, and provide the most caring support I've seen on social media, we would love to have you.
The Lipedema Link podcast already has several stories you can watch, and the level of care this dynamic duo extends to the community is simply wonderful. Maybe you have a story you would like to share, I highly recommend reaching out to them.
LEARNING MORE ABOUT LIPEDEMALipedema Foundation, which is such a great resource, and they have a one page brochure you can print, or even ask for printed copies, and share with your doctors, family, and friends. I like to leave them on bulletin boards in the gym, favorite cafes, any place someone with this condition (or someone who knows them) might find it. The Standard of Care for Lipedema in the US is also an amazing resource to learn even more.
The Lipedema Foundation is a not-for-profit organization that provides grants for research into all things Lipedema! I had the absolute pleasure of meeting their founder, Felicitie Daftuar at the 2014 FDRS Conference. This group is responsible for over 12 million in grant donations to try to find some real answers into what we are dealing with.
The research presentations at the annual FDRS conference is a highlight for me, they give me hope and let me know we have some major medical professionals in our corner.
So please know you are not alone. And if you are able, I highly recommend coming to the next FDRS Conference, being held in St. Louis! I cannot explain the feeling when you walk into a room filled with hundreds of others just like you.