In early April 2013 the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) was contacted by Dr. Mishy Lesser, a Boston-based educator, seeking assistance for a child in the Amazon jungle region of Ecuador. Dr. Lesser had just received an urgent plea for help from a former student, Ladio Dominguez, who resides in Shushufindi, Ecuador. Ladio spent two months in Amherst, Massachusetts, in
» Read moreA Partnership with LAM One of the most difficult manifestations of lymphangiomatosis and Gorham’s disease to diagnose and manage is diffuse pulmonary lymphangiomatosis (DPL). This manifestation involves the lymphatic system throughout the patient’s chest and has numerous clinical presentations. DPL often is a slowly progressing lung disease that can lead to respiratory failure that can occur at any
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The Lymphangiomatosis & Gorham’s Disease Alliance is pleased to commemorate the recent 5th-Year milestone of its founding by Jana K. Sheets. Jana had a dream in two parts: one, to build an organization of people who would support one another in their journeys with lymphangiomatosis and Gorham’s disease; and, two, to promote awareness about these diseases, help patients
» Read more5K/Run-Walk Marks the Battle of Young Girl Folks in the community of Orrick, Missouri, got together a few months ago and decided to do something to give support and hope to a young girl in town, Maci Jeffries. Maci is 11 years old and has been struck with Gorham’s disease, a very rare disorder which can seriously affect the musculoskeletal
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Alfie Milne’s parents, Mark and Tracy Milne, generously shared his story on our website earlier this year. At the time Alfie had been on Rapamune/sirolimus for a few months and had just received his walking frame. Now, Alfie has been on the drug for almost a year, since September 2011, and is doing remarkably well. “The change in his health
» Read moreBy MARIE GILBERT marieg@herald-mail.com 3:32 p.m. EDT, August 18, 2012* Most days, Alli Rogers is in pain. This is the reality of the young woman’s life as she battles a rare disease — one for which there is no cure. She has been in and out of hospitals, has had three surgeries, with the most recent requiring three blood
» Read moreEach year at the International Conference of the American Thoracic Society, the Public Advisory Roundtable hosts a day-long Patient-Family Forum where patients with chronic lung diseases and their families can share experiences with pulmonary doctors and one another, learn about how to manage their symptoms, and the latest in research and treatment for a variety of diseases. At the 2012
» Read moreHow often have you found yourself sitting in a waiting room with a clipboard balanced on your lap trying to put complete answers in too small a space, all the while worrying that you’ll leave out something important? All doctors and hospitals ask for much of the same information at your initial visit or when you seek treatment in
» Read moreThe LGD Alliance is a proud CaringBridge Partner. Many members of our community have created a free CaringBridge page to help them keep in touch with friends and family as they deal with the challenges of living with lymphangiomatosis and Gorham’s disease. CaringBridge’s free websites offer a personal and private space to communicate and show support, saving time and emotional
» Read moreHow many doctors do you have? Two? Three? Ten? Do you ever wonder if they all talk to each other? If any of them ever communicate with one another? You may be shocked by the answer. A study published in The Archives of Internal Medicine in January 2011 found that 69% of Primary Care Physicians (PCPs)—family doctors and pediatricians—said
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