To support others like me and to raise money for such a rare disease.

 

 

I have been developing different ways to raise awareness in Pennsylvania about the rare disease called lymphangiomatosis. We have had a Golf Outing and A Benefit. Thanks to the LGDAlliance .org I have been united with others like me. Now we need to go a step further and reach all 50 state to let doctors know what this disease is.

 

 

Weather you want to call these two diseases the same or different they are both very rare and very distructive. I have Lypmhangiomatosis in my skull, vertebrae, ribs, left arm, right leg, pelvis, spleen, and  tonsils which is part of the lymphatic system. You can read my story on the about me tab of this website.

They say you can make a different one step at a time. My new theory is you can make a difference one state at a time.

 

 

What is Lymphangiomatosis and Gorham’s Disease?

This page gives you a definition of both Diseases.

 

lymphangiomatosis (limf-an-jee-oh-mah-TOE-sis) means: lymphatic system (lymph) vessel (angi) tumor or cyst (oma) condition (tosis). Lymphatic vessels reach every part of the body except the central nervous system (the brain and spinal chord), which has its own specialized system. The lymphatic system has three main functions

Gorham’s (GOR-amz) disease is a very rare skeletal condition of uncertain etiology, characterized by the uncontrolled proliferation of distended, thin-walled vascular or lymphatic channels within bone, which leads to resorption and replacement of bone with angiomas and/or fibrosis.[1] [2] Because of the loss of the affected bone, the condition has been referred to as disappearing bone disease, vanishing bone disease, and massive osteolysis. In medical terminology osteolysis means: bone (osteo) breaking down or destruction (lysis).

Read on to learn more………………………………

 

 

 

 

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