Mucopolysaccharidosis Type VI
How do I find a center of excellence in Mucopolysaccharidosis Type VI?
Mucopolysaccharidosis Type VI is a lysosomal storage disease and there are several centers of excellence in the United States and other countries for lysosomal storage disorders, including Mucopolysaccharidosis Type VI. To find a doctor or center that specializes in metabolic genetic conditions or lysosomal storage disorders like MPS VI in the United States, you can use the Clinic Locator Tool provided by the Maroteaux-Lamy Syndrome Resource Center at http://www.maroteaux-lamy.com/en-us/pages/patient/ClinicLocator.aspx.
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What specialist doctors should I see with Mucopolysaccharidosis Type VI?
Because Mucopolysaccharidosis Type VI is a condition that affects various parts of the body, people with Mucopolysaccharidosis Type VI may need to see many specialists for their medical care. Some of these types of specialists can include orthopedic surgeons (bone and spine doctors), cardiologists (heart doctors), pulmonologists (breathing/lung doctors), medical geneticists (genetics doctors), ophthalmologists (eye doctors), audiologists (hearing specialists), otolaryngologists (or ENTs; ear, nose and throat doctors), neurologists (neurologists), and surgeons for any other health problems that may require surgical treatment.
If I have Mucopolysaccharidosis Type VI, 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 and that there is currently one approved treatment, galsulfase. Your doctor should also know that mucopolysaccharidosis type VI is a genetic condition that is inherited in an autosomal recessive pattern. This information can help your doctor learn about how to best take care of you and who else in your family may need to be tested for mucopolysaccharidosis type VI.
- Maroteaux-Lamy Syndrome Resource Center - http://www.maroteaux-lamy.com/en-us/pages/patient/TreatmentERT.aspx