Stories from the Heart

These stories will touch your heart conveying with transparency and sincerity what it is like to live with Gorham’s disease and lymphangiomatosis. They are heart-felt perspectives of patients, family members, caregivers, friends, and those who have lost loved ones. They are here to offer hope, support, and encouragement to those affected and to educate and open the eyes of the world.

This page is dedicated to all of the people around the world who have been affected by lymphangiomatosis and Gorham’s disease.

Hansel
“I grew up playing with my brother and sisters without any trouble until 1997, when I was 9 years old and suffered a fracture on my left leg”

Ricardo
“It is getting easier to fight this battle with the help of www.lgdalliance.org and of course www.gorhams.dk, www.gorhams.org, and all the other people around the world that are working hard to create awareness about this disease.

Robin
“Up until high school, her doctor was a pediatric pulmonologist . He was awesome with her. He was honest, he did research, and he even cried with her. He told her "she was one in a billion".

Leyton
“We were glad to have a diagnosis until we researched it and found that it’s so rare and that most of the information that we read was not very encouraging. Plus most of the doctors hadn’t even ever heard of the disease….that was the scariest part”.

Claire
“I will continue to pray for a medical champion to lead us in research, education and to direct us toward a cure.”

Jack
“. . It soon came to surface that I may in fact have this really rare and pretty much unheard of condition called Gorham’s disease”. This was rather worrying, at first, since a definite “cure” of a “magic pill” to make it go away does not exist”.

Gifts From the Heart

Our Honorary Donation program allows you to offer a personal and meaningful gift in honor of a friend or loved one. A Memorial Donation can be given as a tribute to remember someone who has touched your life. All donations qualify for tax-deductibility to the donor pursuant to the IRS Tax Code for gifts to a 501 (c)(3) public charity.

Whatever amount you decide to give, you are helping to make possible the delivery of vital patient support programs and helping to begin for the first time - focused study of the causes of these orphan diseases. Be assured that you will forever have immense gratitude from all those who will be helped.