Niemann-pick types a/b
Healthcare/Doctors
How do I find a center of excellence in Niemann-Pick disease (SMPD1-associated)?
The National Niemann-Pick Disease Foundation (www.nnpdf.org) has a list of organizations that are very active in research into and treatment of Niemann-Pick disease type A and type B. Visit their website to get started finding a center of excellence near you.
References
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If I have Niemann-Pick disease (SMPD1-associated), what should my doctor know about managing the disease?
To manage Niemann-Pick disease (SMPD1-associated), your doctor should:
- Assess your diet to make sure you are getting enough calories
- Test motor and neurological skills
- Monitor weight gain and growth
- Examine for bleeding problems and low platelets
- Examine for shortness of breath and check for lung infections
- Monitor liver enzymes and check for stomach pain
- Bone scans to check bone health
- Eye exam
