Stories : Patients & Caregivers : Lymphangiomatosis & Gorham's Disease Alliance

Sharing our stories helps us connect and draw strength from one another.

You don't have to feel alone.

We invite you to share your own story to inspire, comfort, and support others.

Hayley

Living with GSD
Holly

Living with GSD
Becca

Parent of Child with KLA
Emily

Living with GSD
Julie

Living with CCLA
Leeya

Living with GLA
Becky

Parent
Kevin and Jen

Parents of Child with GLA
Scot

Living with KLA

In Memorial

In Memorial

Elsie
A Father's Journey Through Grief - In Memory of Elsie
Elizabeth A.
"I am living proof that one can lead a good quality of life despite having GLA. For that, I'm abundantly grateful."
Feb 2024 - 75 years old
Melanie Rose Chaite
"...was an inspiration to many others with complex lymphatic anomalies..."
February 12, 2020 - 26 years old
Joshua Avis
"That sweet, strong, brave, angel was our hero"
November 19, 2019 - 11 months old
Scott Inman
"...never give up hope, even when it LOOKS hopeless, there’s a tomorrow."
January 16, 2009 - 37 years old
Brittany Danielle Burford
“I’m not afraid of dying anymore. I don’t want to, but I’m not afraid.”
September 26, 2009 - 18 years old
Robin Brown
"She always found a way to brighten up a room and make us laugh."
February 7, 2007 - 26 years old
Marcus Veng Petersen
"...he was only here for a brief span, his footprint can be seen around the world."
September 7, 2004 - 7 years old

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Our community impact!

Social Media Followers

3,482
Registry Participants

521
Funds Raised for Research

$970,000

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