Patient & Family Resources
Lymphangiomatosis and Gorham’s disease can involve numerous body systems. You likely will find yourself dealing with several specialists, in addition to your pediatrician or family doctor. You may even find yourself with pairs of these specialists: one to care for you at home and one with more experience with your diagnosis in the city where you go for treatment.
Patient Support Services
A major component of the mission of the LGDA is patient support. This includes two very important programs: our patient matching program that helps patients and families connect with one another and our awareness program that helps to raise awareness of lymphangiomatosis and Gorham’s disease among professionals and the public. In order to streamline these programs and maximize their effectiveness we have created a standard registration form for patients. It is one page that takes about 15 minutes to fill out and submit online. We encourage all of our patients to register. It helps us help you.
Those living with rare diseases such as lymphangiomatosis and Gorham’s disease may be seen by several different healthcare providers, all of whom will have records about the patient’s condition, results of testing, reports about surgeries and other procedures, and the medications prescribed for the patient. Communication between these providers may be slow or incomplete. Patients and their families often find that they must take responsibility for making sure the information reaches all of the doctors involved in the patient’s care.
Those living with rare diseases face an enormous learning curve when trying to understand their disease and communicate effectively with their healthcare providers. The Latin terms and medical jargon, the alphabet soup of test names, and the dense language of medical reports and journal articles – not to mention what Google finds – can leave one feeling overwhelmed. While understanding the science will not change the realities of everyday life with lymphangiomatosis and Gorham’s disease, it can provide a broader framework for understanding the diagnoses, helping caregivers and patients rise to the challenge and become conversant in the language of rare disease, read medical journals with a critical eye, understand clinical trials, and communicate clearly with their doctors.
Here you will find links to websites maintained by organizations concerned with rare diseases, research and treatment; some scientific and medical journals; professional and medical societies; government agencies; and organizations that offer a variety of support services that assist patients and families dealing with rare or catastrophic illness.