APRIL’S NOTE
This week's Lippy Notes is a little late (life happens) and skips the usual essay, but it's packed with resources worth your time. You'll find two free virtual webinars from NORD on navigating rare disease care and insurance barriers, a new Lipedema Foundation blog and video walking through a clinician assessment, and details on a 6-month GLP-1 virtual care research study you may qualify for. There's also a look at a new study comparing metabolic risk in women with and without lipedema, some honest encouragement for getting through a hot, compression-filled summer, and a Finds & Faves spotlight on Lily Clinic in Roanoke, VA.
THIS WEEK IN LIPEDEMA
This is not directly lipedema-related, but many in the lipedema community also have other chronic illnesses, some of which are considered rare. Join the National Organization for Rare Disorders (NORD) for two free, virtual Living Rare, Living Stronger® webinars designed for patients, caregivers, and families navigating a rare disease. From 3-4 p.m. ET on July 30, learn about common insurance barriers and practical tips to overcome them. RSVP: https://bit.ly/4pqrkIc From 3-4 p.m. ET on Aug. 27, explore new approaches to improving your rare disease care. RSVP: https://bit.ly/4vZmIei
The Lipedema Foundation published a blog post with Sarah Whitehead, MN, ARNP, as she demonstrates using their Clinician’s Guide to Lipedema to assess a patient for lipedema. There’s also a great video documenting this process. The guide is the perfect resource to share with your healthcare providers.
Interested in trying a GLP-1? Again, not lipedema-specific, but here is some information you may find helpful. Thank you to the friend who shared the following: “Omada Health, with support from the Obesity Action Coalition (OAC), is seeking participants for a new 6-month virtual care clinical research study. The study is designed to better understand real-world experiences and changes in weight, health, and body composition among people starting GLP-1 treatment through a virtual care program.” If you qualify, your medication is reimbursable and you get access to coaching, an exercise kit, and a body composition scale. Learn more and find out if you may qualify HERE.
A July 10 study compared 70 women with lipedema and obesity with 70 women who had obesity without lipedema. Most measures of metabolic and cardiovascular risk were similar between the groups. The researchers suggested that obesity may be a stronger driver of metabolic risk than lipedema itself, although the cross-sectional study cannot establish cause and effect. You can read the study abstract HERE.
A BIT OF ENCOURAGEMENT
Summer is not easy for a lippy body. The compression that keeps you functional is the last thing you want against your skin in July. You’re also trying to cover all the things you don’t want people to see, which makes you even more uncomfortable. What I keep coming back to is that the discomfort you're managing right now is something a lot of us are experiencing. It’s ok to sit in the shade or even stay home in the air conditioning. If it's the season you go anyway and sweat through it, you go and make the best of it. Neither choice is wrong.
Just remember that your lippy family is out here sweating it out, too. And if you’re anything like me, you are counting down the days to Fall. 🍁🍂
FINDS AND FAVES
I have one find to share with you today. I ran across this business on Facebook and have really been enjoying their helpful videos.
Meet Lily Clinic
Lily Clinic in Roanoke, Virginia is a specialized practice focused on lymphedema, lipedema, vascular health, wound care, and wellness. They help people manage chronic swelling, treat venous insufficiency and hard-to-heal wounds, offer scar management, and provide Manual Lymphatic Drainage to support healing and post-surgical recovery. Led by a board-certified lymphedema and wound specialist, the clinic is known for its personal, whole-person approach to care.
That’s it for this week.
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See you next Friday. 💜
April
P.S.
If you’d like to share some of your lipedema journey in a future Lippy Notes, let me know by clicking reply.