Letter to Friends and Supporters-Please View Recent Update as of 1.3.2026! Please scroll to the very bottom to see the update.

I have reached my first goal and have placed to Tier two goal on hold as I continue to work with various doctors for the best care plan. Thank you to everyone for helping reach my goal!

Subject: Support for Lifelong Treatment & Care – Congenital Lymphedema

Dear Friends and Family,

First, thank you, from the bottom of my heart to those who have already offered love, prayers, and encouragement. Your support has given me space to begin healing not just physically, but emotionally. It has also given me the strength to write this letter and share more of my story with honesty and care.

For those who don’t know, I’ve been living with an undiagnosed medical condition since I was 17.

One evening while at work I noticed massive swelling in my left foot and ankle. I assumed it was a sprain, but as the days progressed the swelling never went away. After years of tests and doctor visits with no clear answers, a physician in Denver suspected lymphedema in 2001. But there was no definitive test, no treatment plan, and no real guidance. The few images I found online terrified me. I poured myself into healing, trying everything from diets and detoxes to spiritual work, bodywork, and therapy. Still, no lasting relief and no guidance for treatment.

Emotionally, this condition shaped me as much as it did physically. I learned to hide it, covering my leg, avoiding attention, even from those closest to me. It’s taken years of deep inner work to begin meeting this part of myself with compassion instead of shame.

Then last summer, everything shifted. I met a woman with lymphedema, and she immediately recognized my symptoms. She encouraged me to seek proper testing. Around the same time, a change in my insurance gave me access to out-of-network specialists. Within days, she supplied with the names and resources I needed to pursue proper testing, and I had appointments with two of the top experts in the country.

On March 27, 2025, I met with Dr. Wei Chen at the Cleveland Clinic, one of the leading lymphedema surgeons in the U.S. After nearly 30 years of not knowing, I was finally diagnosed: congenital Stage 3 lymphedema in my left leg, Stage 2 in my right, and Stage 1 systemically. He also diagnosed this as congenital (born with) and not from secondary causes.

There are five stages of lymphedema:

• Stage 1: mild swelling, manageable

• Stage 2: persistent swelling, early fibrosis

• Stage 3: advanced swelling, hardened tissue

• Stage 4: advanced fibrosis leading to recurring infections (cellulitis)

• Stage 5: elephantiasis, severe disfigurement, immobility, and irreversible damage

In addition to the physical risks, advanced lymphedema can affect cognitive function and internal organs. Dr. Chen was clear: without an intensive care plan and daily treatment, I risk losing mobility, increases risk to infections and skin damage, and long-term cognitive/neurological and organ health.

The surgery treatment that he proposed during our visit involves a specialized liposuction to remove stagnant lymph fluid, fibrosis and scar tissue. It essentially resets the drainage system to prevent infection and further tissue damage. But it is not a cure. Because my lymphedema is congenital, my lymphatic system will always need lifelong support.

Another challenge:

After Dr. Chen submitted a pre-authorization for surgery, insurance denied the claim and denied his appeal because I am still able to walk. Getting to the point of immobility would mean that I would have to wait until I had ongoing and dangerous infections and advanced stages of elephantiasis. According to Dr. Chen, once the disease progresses to this stage, this kind of surgery is no longer an option.

Here’s something I’ve learned through this process:

Hospitals don’t profit from lymphatic treatments and surgeries, and as a result, many don’t invest in training or research. Lymphedema is underfunded and under-researched, and most medical schools don’t include the lymphatic system in core education. This creates a shortage of doctors who specialize in lymphedema care, and dedicated treatmens centers, which in turn gives insurance companies cover to deny care, claiming there’s insufficient evidence or expertise to justify approval. It’s not that the care doesn’t exist. It’s that the system isn’t set up to support it. This leaves people like me navigating a lifelong medical condition without adequate support and without an ability to find proper diagnosis or treatment.

The Cleveland Clinic has offered to perform the surgery out-of-pocket at $25,000 per leg, starting with the left. After reflecting deeply, I’ve realized that while surgery is important, my first priority must be long-term daily care. Without consistent maintenance like compression therapy, inflammation management, de-congestive therapy and lymphatic drainage, even a successful surgery won’t stop this condition from progressing.

There are three essential machines I need to support my lymphatic system daily:

1. A deep oscillation device (Hivamat) to break up stagnant tissue

2. A pneumatic compression pump to move fluid through the lymphatic system and out of the body

3. A PEMF mat to reduce inflammation, prevent infection, relieve organ pain, and support cognitive health

These tools, along with compression garments, massage therapy, acupuncture, and supplements, make up my daily, weekly, and monthly care plan. They are vital to preserving my health, avoiding infections, and preventing progression into the more dangerous stages of lymphedema.

Two Tiers of Support:

To make my path forward as clear as possible, I’ve broken down my fundraising into two phases. Tier One is the most urgent and important right now, as it lays the foundation for all future care and wellbeing.

1. Tier One – Stabilization Care ($35,000):

This is my top priority. It funds one full year of intensive, ongoing treatment to stabilize my condition: daily lymphatic drainage, decongestive therapay, compression therapy, inflammation support, essential medical equipment, and appointments with specialists. Without this foundational care, surgery would have a lower success rate both before and after the procedure. This is the most critical phase of my healing journey.

2. Tier Two – Surgery: Left Leg ($30,000) to include surgery cost (25,000) and travel and post-operative care ($5,000)

With Tier One and Tier 2 the total goal is $65,000.

Every contribution, no matter the size, helps move me toward stability, healing, and a sustainable future. While surgery may be part of my care plan down the line, my most urgent and ongoing need is for long-term daily treatment. All donations will go toward essential care to prevent progression, manage current symptoms, and support future needs, including surgical intervention if necessary.

Your support will help fund the care insurance doesn’t cover and give me the best chance at preserving mobility, organ health, and overall quality of life.

Thank you for reading, for seeing me, and for standing beside me on this lifelong journey toward healing.

With love,

Carla

If you’d like to learn more:

Financial Overview

A transparent look at the treatment and recovery costs I face:

• Detailed Treatment Budget

• Photo of the Compression Pump – This is one of the devices I still need to purchase. A specialist came to my home to demonstrate it, and it made a real difference. I’m hopeful it can become part of my daily treatment routine.

Advocacy & Support

Join the movement or learn how others are helping patients like me:

•Lymphedema Advocacy Group

Medical Expertise

The science and innovation behind this journey:

• Video with Dr Wei Chen Cleveland Clinic

• Article by Dr Chen