Lymphangiomatosis & Gorham’s Disease Alliance

About the Alliance

Founded by Jana K. Sheets, a patient, in 2007, the LGDA is a 501(c)(3) nonprofit incorporated in the United States and serving a worldwide community of patients, many of whom are young children, and their families. The LGDA:

• provides information and a support network for patients and their families;
• distributes information to patients, the public, the medical community, and the media;
• promotes and supports basic science and patient-centered clinical research that will improve understanding of these diseases and establish best practices for their diagnosis and management; and
• advocates for public policies that benefit those living with these rare lymphatic diseases.

Our Mission

The mission of the LGDA is to bring hope to and improve the quality of life of patients with generalized lymphatic anomaly (GLA), also known as lymphangiomatosis, Kaposiform lymphangiomatosis (KLA), and Gorham-Stout disease (GSD) by providing support to members of the patient community and their families; education for the community, professionals, and the general public; and supporting research that will improve understanding of these diseases and establish best practices for their diagnosis and management.

Disease Information

What is lymphangiomatosis?

In medical terminology lymphangiomatosis (limf-an-jee-oh-mah-TOE-sis) means: lymphatic system (lymph) vessel  (angi) tumor or cyst (oma) condition (tosis). There is no standard definition describing this disease that has been agreed to by the medical/scientific community.

Lymphangiomatosis presents in a number of ways, has been described in a variety of terms, and for these reasons is often misdiagnosed. It has been recommended by medical professionals who have seen the disease, that a multidisciplinary approach be chosen in forming the patient’s medical team.

What is Gorham’s disease?

Gorham’s (GOR-amz) disease is a rare musculoskeletal condition in which spontaneous, progressive resorption of the bone occurs. It is known variously as massive osteolysis, disappearing bone, or vanishing bone disease, and a variety of other names. In medical terminology osteolysis means: bone (osteo) breaking down or destruction (lysis). Gorham’s disease was first reported in 1838, again in 1872, and was finally defined in 1955 by Gorham and Stout as a specific disease entity. Although described long ago, this rare and potentially catastrophic disease remains understudied, thus, poorly understood. It is thought to be closely related to or even a severe form of lymphangiomatosis that is characterized by a proliferation of thin-walled vascular capillaries or lymphatic vessels that starts within the bone. As these vessels proliferate, they aggressively invade the adjacent bone leading to resorption and replacement of angiomatous tissue.

Ways to Give

Become a Donor

The Lymphangiomatosis and Gorham’s Disease Alliance relies on your voluntary, tax deductible contributions to improve the quality of life for those affected by these diseases and support research to improve diagnosis and treatment. Your donations help us to provide patients and their family’s much-needed educational information and help to keep them connected with one another through a worldwide patient network. When you give a gift to the LGDA or host a fundraiser you also are making an important contribution to the effort to raise awareness and support efforts that will lead to a cure.

Volunteer

LGDA volunteers truly make a meaningful difference in the lives of those affected by lymphangiomatosis and Gorham’s disease. Each of our programs depends on the efforts of volunteers, so there is no limit to ways in which you can use your skills and talents to help bring hope and help to these families.

Tell Your Story

Every patient, every family has a story to tell. No two are alike. And by sharing our stories, we help those who are new to our patient community as well as those who are veterans of this battle. You don’t have to be a professional writer to tell your story. Every story about our “Warriors” is written by the patient or a member of their family—usually a parent. These stories help to raise awareness about these diseases and give physicians an insider’s viewpoint of what the journey is like for patients and their families. Each and every one serves to help members of this community.

Become an Advocate

The more constituents we have contacting legislators, the stronger we become, and the harder we are to ignore. So please join us in our advocacy program. As an advocate, we may ask that you contact your state and federal Congressmen on behalf of the LGD Alliance and inform them about current or prospective legislation that will affect our organization. You can do this through email, letter writing, phone call, or even a personal visit. The more people contacting lawmakers, the better chance those policies in support of LGD Alliance will be passed and our patient’s concerns are met.

For more information, please click here.