Bo is one of the few people in the world diagnosed with lymphangiomatosis. This one of four very rare and chronic Complex Lymphatic Anomalies characterised by a diffuse proliferation of lymphatic vessels. It affects internal organs, bones, soft tissue and/or skin. To illustrate the rarity; for example in the Netherlands, less than one new patient is diagnosed each year.
==> Bo and his parents are greatly depending on communication between patients all over the world. The (parents of the) patients are the specialists of the illness. By exchanging experiences and knowledge of local doctors between patients, each patient can be helped most effectively. In the total European Union there might be 100-200 patients, but our community is only a few dozen patients world wide. To extend our communitie to smaller countries in the EU and towards groups of people who don't speak English, the LGD Alliance-Europe simply needs more money. With funding we can provide a multi-langual website and other ways of communication. And medical professionals need to be 'educated' to recognize kids with Complex Lymphatic Anomalies to avoid easy misdiagnoses, useless therapies and often years of uncertainty and suffering.
==> Bo is for the rest of his life fully depending on medical specialists and new results from future scientific research. Because of the rarity of his disease, research isn't done very much and it needs a lot of funding. There are several drugs used for patients with Complex Lymphatic Anomalies, but they only manage to slow things down. These is no cure! This page will provide all followers insight in the adventures that Bo and his friends and family undertake to raise money for Complex Lymphatic Anomalies. Hopefully you can support us mentally, share our campaigns with your Facebook friends, and donate for all patients like Bo.
==> What is lymphangiomatosis? Basically it is a very rare lymphatic malformation. Symptoms and prognosis of the illness vary greatly between individuals and according to the organs involved. Though little is understood about causes, lymphangiomatosis is forming several tumour like malformations in the lymphatic system. A single mass of lymph vessels or cyst is known as a lymphangioma. Lymphangiomatosis is a disease in which lymphangiomas are widespread or multifocal manner (i.e. involving several parts of the body). For Bo this means soft tissue in the back, shoulder and neck, which sometimes have their effect on his lungs. But he also has many small lesions in bones throughout his whole body. The name lymphangiomatosis comes from the words 'lymph-' (describing the lymphatic system), '-angio-' (meaning relating to vessels), '-oma-' (tumour or cyst), '-tosis' (condition). More information on Complex Lymphatic Anomalies: www.lgda.eu and www.lgdalliance.org (USA)
