How do I find a center of excellence in Alpha-mannosidosis?
There are not centers of excellence specifically for Alpha-mannosidosis, but there are several centers of excellence in the United States and other countries for lysosomal storage disorders, including Alpha-mannosidosis. To find a doctor or center that specializes in metabolic genetic conditions or lysosomal storage disorders like Alpha-mannosidosis in the United States, you can access the list of centers compiled by the National Mucopolysaccharidosis Society by visiting http://mpssociety.org/treatments/resources/ and clicking the "MPS Genetic Centers" Link to download the corresponding Excel file. Another option to access this file is to directly go to http://mpssociety.org/wp-content/uploads/2016/03/Tertiary-Care-Centers.xlsx. Even though this list is on a website focused on Mucopolysaccharidoses, these doctors often specialize in many different types of lysosomal storage diseases, including Alpha-mannosidosis.
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What specialist doctors should I see with Alpha-mannosidosis?
Because Alpha-mannosidosis is a condition that affects various parts of the body, people with Alpha-mannosidosis may need to see many specialists for their medical care. Some of these types of specialists can include orthopedists,medical geneticists, ophthalmologists, audiologists, otolaryngologists (or ENTs), neurologists, and surgeons.
If I have Alpha-mannosidosis, what should my doctor know about managing the disease?
Your doctor should know that this is a progressive condition that affects multiple organ systems of the body. Your doctor should also know that Alpha-mannosidosis is a genetic condition that is inherited in an autosomal recessive pattern. This information can help you doctor learn about how to best take care of you and who else in your family may need to be tested for Alpha-mannosidosis.