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.

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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.

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The Lymphatic System

The lymphatic system is an extensive drainage network that helps keep bodily fluid levels in balance and defends the body against infections. It is made up of a complex network of lymphoid organs, lymph nodes, lymph ducts, lymph tissues, lymph capillaries and a network of lymphatic vessels that carry lymph and other substances throughout the body.

In comparison to the cardiovascular system the lymphatic system has not in the past been the focus of much research. However its’ important role in the body’s immune system has meant that it has increasingly become the focus of research in more recent times.

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Bone Biology

Bone structure is somewhat similar to reinforced concrete that contains structural metal reinforcement rods or bars. These metal reinforcements are commonly called rebar. Protein strands make up the rebar of bone. Calcium and phosphorus mineral crystals deposited around the protein strands are somewhat like the concrete poured around the rebar in reinforced concrete. The protein strands provide the tensile strength that holds everything together and the minerals provide the solid structure. If bones were made only of protein, they would be too flexible. If bones were made solely from minerals, the skeleton would be too brittle.

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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.


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Medication Information

This page was created to act as a repository for information, written in language most patients can understand, about medications that are sometimes used in the treatment of lymphangiomatosis and Gorham’s disease, as opposed to the medical and scientific jargon you may encounter on web sites intended for professionals. Having information in language that you use every day is critical when it comes to medications. This is especially true when you live with a rare disease for which there is no specific drug.

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Vibrant Produce

Nutrition and Chylous Effusions

Among other things, chyle contains fats and proteins that the body needs for energy and white blood cells which help fight infection. When the chyle escapes the lymphatic vessels the body is unable to use its components efficiently, or not at all, and must compensate for the losses. This can lead to malnutrition, fatigue, and increased risk for infection. Here we have compiled information about chyle, chylous leaks, and nutritional habits that may help to counteract the effects of the loss of nutrients seen in some patients with lymphangiomatosis and Gorham’s disease.

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