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Treatment for twins with Milroys Disease

Treatment for twins with Milroys Disease

My 14 month old twin boys have been diagnosed with Milroys Disease (a form of primary lymphedema), a rare disorder in which the lymphatic system didn't develop properly or at all. This means that their limbs (mostly lower) are very swollen all the time. Through Manual Lymphatic Drainage (a special massage) I am able to manually drain the lymph (the water that runs through your body similar to the way blood does). This disease comes with a high risk for infection and cellulitis is very common in lymphedema patients. The risk is so high that is one of them gets a cut on the swollen limb they need antibiotics to prevent infection. There are also a few cancers associated with chronic edema patients (which my boys are). This is a life long disease with no cure, only treatment. Compression garments are very helpful in keeping the swelling down and lowering the risk of infection. These garments are very expensive and our insurance company wont cover them as they are categorized as cosmetic. Each day that goes by that they aren't wearing the proper garments is another day where we risk infection and a hospital stay. We are already thankful to anyone who wishes to donate for their care. We live paycheck to paycheck like most people do and we simply cannot afford it with our current household income.

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