 
 Society for Mucopolysaccharide © 2009
|
  Addenbrooke's Hospital, Cambridge
Addenbrooke's Hospital, CambridgePaediatric Metabolic TeamDr. Uma Ramaswami, Consultant Metabolic Paediatrician Services ProvidedThe Paediatric LSD team provide a family centred service for the diagnosis, treatment and management of all Mucopolysaccharide and related lysosomal storage diseases. This service is a national designated centre for lysosomal storage diseases and provides multidisciplinary clinics, admission for diagnosis, investigations, management including newer treatments and ongoing long term care and assessments. The team work closely with the family and an extensive multidisciplinary team both hospital and community based. These include paediatric sub-specialities: ophthalmology, audiology, cardiology, nephrology (visiting consultant from Nottingham), neurology, dermatology, genetics, endocrinology, ENT, neurosurgery, orthopaedics, general surgery, and child development centre. We are also supported by paediatric radiology and imaging, nuclear medicine, haematology and biochemistry. We liaise closely with the adult metabolic team to provide support during transition from children's services to adult services which usually occurs between 16-18 years of age. Dr Uma Ramaswami provides a paediatric LSD outreach clinic at the Royal Free Hospital, London. Treatments such as enzyme replacement therapy (ERT) are given if deemed appropriate according to the national guidelines. ERT is initiated on site and when it is considered safe and in agreement with the family and all parties concerned, the treatment can continue at home allowing the family to be more independent and this service is provided by a home care company. Patients are closely monitored throughout their lives and attend regular visits to clinics for investigations and assessments, these are carried out six to twelve monthly or more frequent if clinically indicated or should the family request more frequent appointments. We also work very closely with patient and family support groups and value greatly their patient and family advocacy support service. Who are we and how can you contact us?Paediatric Metabolic Unit Dr. Uma Ramaswami, Consultant Metabolic Paediatrician Janet Fox, Metabolic Secretary Clare Taylor, Paediatric Metabolic Clinical Nurse Specialist Greta Lyons, Paediatric Metabolic Clinical Nurse Specialist Alison Hough, Paediatric Metabolic Clinical Nurse Specialist Helena Champion, Metabolic Dietician SHO (metabolic,neurology,endocrine) 01223 245151, Bleep 154 609
|
