Help Me Reclaim Mobility and Dignity

My name is Debrena, and I live with Stage 4 Lipolymphedema and Hypermobile Ehlers-Danlos Syndrome (hEDS). These conditions make attending events, traveling, and walking painful, and without the right mobility devices, dangerous as I age.

What is Lipolymphedema?

It’s a combination of Lipedema and Secondary Lymphedema. Lipedema is a painful connective tissue disorder that damages the lymphatic system. Imagine an “oil spill” inside the body—lymph fluid leaks outside of its vessels, and in response, the immune system wages a constant battle. That battle creates swelling, hardened tissue, and pain so intense that even touch can feel unbearable. Secondary Lymphedema adds further swelling due to blockages in the lymphatic system.

What is Hypermobile Ehlers-Danlos Syndrome?

hEDS is a genetic connective tissue disorder that affects the body’s collagen—the protein that gives structure and strength to joints, skin, and blood vessels. For me, this means my joints are unstable, often moving too far out of place, and I live with chronic joint pain, frequent sprains, and fatigue. Even simple movements like standing, walking, or lifting something can lead to injuries or setbacks.

The instability caused by hEDS makes walking especially dangerous because my knees and ankles can suddenly give out. Over time, this has compounded the pain and swelling from Lipolymphedema, creating a cycle where walking has become less and less possible.

The last geneticist I saw told me flatly: “You should stop walking.” At the time, I resisted. But over the years, even with over 100 pounds of weight loss, my mobility has continued to decline.

Why I’m Fundraising

I’m raising funds for two mobility devices:

These devices aren’t luxuries. They are necessities that will allow me to keep living with dignity, independence, and purpose.

Why This Matters

I’ve spent years advocating for people with Lipedema, Lipolymphedema, and other chronic conditions, reaching millions of people online and offering compassion and education to others like me. But advocacy doesn’t erase the reality that I, too, need support.

The healthcare system makes obtaining specialized mobility devices extremely difficult, even when medical need is obvious. After beginning the application process over a year ago, I learned just how inaccessible and discouraging it can be to get the equipment we need. That’s why I’m turning directly to community: to help me bridge the gap.

How You Can Help

Your support doesn’t just help me regain mobility. It allows me to continue my advocacy, storytelling, and community work, reminding others living with these conditions that they are not alone and do not have to feel ashamed for using mobility devices! Dignity and joy are possible even in the hardest chapters.

From the bottom of my heart, thank you for reading and for considering a gift toward my mobility and independence.

With gratitude,

Debrena (Brena Jean)