Patient & Professional Resources
What is lymphangiomatosis?
Lymphangiomatosis (limf-an-jee-oh-mah-TOE-sis). In medical terminology lymphangiomatosis 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.
Learn more . . .
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.
Learn more . . .
Finding a physician
Lymphangiomatosis and Gorham’s disease can involve numerous body systems. You likely will find yourself dealing with several specialists, in addition to your pediatrician or family doctor. You may even find yourself with pairs of these specialists: one to care for you at home and one with more experience with your diagnosis in the city where you go for treatment.
Learn more . . .
Patient Support Services
A major component of the mission of the LGDA is patient support. This includes two very important programs: our patient matching program that helps patients and families connect with one another and our awareness program that helps to raise awareness of lymphangiomatosis and Gorham’s disease among professionals and the public. In order to streamline these programs and maximize their effectiveness we have created a standard registration form for patients. It is one page that takes about 15 minutes to fill out and submit online. We encourage all of our patients to register. It helps us help you.
Learn more . . .
Reported Complications
No doubt you have heard about the potential complications of lymphangiomatosis and Gorham’s disease and have many questions. Perhaps one of these complications is what brought you to the doctor in the first place. Here we have compiled links to some other web sites where you can find information about these complications written in terms anyone can understand. We have done our best to choose sites that are maintained by reputable sources, but we still strongly urge you to consult your personal physician with any questions you have.
Learn More . . .
Helpful Links
Here you will find links to websites maintained by organizations concerned with rare diseases, research and treatment; some scientific and medical journals; professional and medical societies; government agencies; and organizations that offer a variety of support services that assist patients and families dealing with rare or catastrophic illness.
Learn More . . .
Coming Soon
We are always developing new areas of this web site. Plans include pages that will include:
- Information on upcoming scientific conferences and meetings,
- Research grant opportunities,
- Access to relevant case reports and studies,
- A multi-disciplinary referral and/or consultation area for physicians only, and
- More educational & clinical information on lymphangiomatosis & Gorham’s disease
