Mucopolysaccharidosis Type VII

Healthcare/Doctors

How do I find a center of excellence in Mucopolysaccharidosis Type VII?

Individuals with mucopolysaccharidosis type VII (MPS VII) would be cared for at centers of excellence in lysosomal storage disorders. The National MPS Society has a spreadsheet with many MPS genetics centers across the United States that is available for download here.

Outside the United States, the MPS Society in the UK can provide help to finding a center of excellence and /or a physician.

References
  • http://mpssociety.org/treatments/resources/
  • http://mpssociety.org/wp-content/uploads/2015/03/Tertiary-Care-Centers.xlsx
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What specialist doctors should I see with Mucopolysaccharidosis Type VII?

If I have Mucopolysaccharidosis Type VII, what should my doctor know about managing the disease?

What specialist doctors should I see with Mucopolysaccharidosis Type VII?

Mucopolysaccharidosis Type VII (MPS VII) is a condition that affects various parts of the body. Depending on the symptom to be treated, many different specialists can be involved, such as 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. For example, there are orthopedic surgeries that individuals with MPS VII can have to relieve some of the pain and other complications from their bone problems.

References
  • http://mpssociety.org/wp-content/uploads/2011/07/MPS_VII_2008.pdf
  • http://ghr.nlm.nih.gov/condition/mucopolysaccharidosis-type-vii
If I have Mucopolysaccharidosis Type VII, 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. They should also know that people with mucopolysaccharidosis type VII (MPS VII) can have problems with anesthesia and surgeries should not be done under general anesthesia without talking to the doctors about this condition. Your doctor should also know that MPS VII 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 MPS VII.

References
  • http://mpssociety.org/wp-content/uploads/2011/07/MPS_VII_2008.pdf

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