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Patients and Families
For Those Affected By Wilson Disease

The WDA Centers of Excellence provide physicians who are well trained in the diagnosis and treatment of Wilson's Disease, physician training and research regarding Wilson disease, broad services needed by Wilson Disease patients and their families, and technical support required by patients (including laboratory metal analysis). 

Great Britain - South East Coast England

Director/Coordinator:  Professor Aftab Ala, Director,Institute of Health and Research (NIHR) Lead for Hepatology South East Coast England, Consultant Gastroenterologist and Hepatologist, Department of Gastroenterology and Hepatology, Royal Surrey County Hospital NHS Foundation Trust and Department of Clinical and Experimental Medicine, University of Surrey,  Guildford, Surrey             

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phone: 0148357112 extension 6990

Team Members:  Professor Aftab Ala –Hepatology; Royal Free Hospital NHS Foundation Trust, London Kings College Hospital NHS Foundation Trust, London –Hepatic Transplantation; Dr Jan Coebergh, MBBS FRCP –Movement Disorders; Dr Sofia Khan, MBBS MDRes FRCP –Neurology; Professor Simon Taylor (MB ChB PhD FCOpth) –Ophthalmology; Dr  Ozan Hancip MBBS MRCPaed –Pediatrics; Dr Ranjit Mahanta  (MBBS MRCPsych MSc DGM) –Psychiatric; Dr Charmian Banks  and Dr Kalliopi Alexandropoulou – Dietitians/Nutritional Consultants; The physical / rehabilitation / occupational  therapy teams will use their recognised expertise in the management of patients with Wilson disease, paticularly in those affected by neurolgical manifestations of Wilson disease – Physical and Rehabilitation Therapy; Sarah Martin –Research Coordinator; There are established expert and  dedicated social services and Team who  will  work with  our patients  to help in the challenges of wilson disease –Social Work; The  speech therapy  team is fully integrated into  the overarching stroke services and will be available  for assessment and management –Speech Therapy;  Dr Chris Harrington BSc (Hon), MSc, PhD, MRSC - Pathology and Diagnostics;  Dr Nayana Lahiri MBBS MRCP - Consultant Clinical Geneticist; Professor Simon de.Lusignan s. BSc, MB BS, MSc, MD(Res), DRCOG, FHEA, FBCS CITP, FRCGP (email This email address is being protected from spambots. You need JavaScript enabled to view it.) -Primary Care & Clinical Informatics / Health Care Management / Clinical and Experimental Medicine; Dr Claire Kelly MBChB MRCP - Clinical Research Fellow (National Institute for Health and Research); Dr Marinos Pericleous MBBS BSc MRCP - Clinical Research Fellow.

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India - K.E.M. Hospital
Director - Dr. Ashish Bavdekar
Associate Professor
Consultant Pediatric Gastroenterologist
Liver and Gastroenterology Unit
Department of Pediatrics
T.D.H. Building, Ground Floor
K.E.M. Hospital, Rasta Peth
Pune 411011
India
Phone: 91-20-66037342
Mobile: 98220 56174
Fax: 91-020-26125603
E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it. or This email address is being protected from spambots. You need JavaScript enabled to view it.

Clinics for Wilson Disease:
Mondays and Thursdays 11:00 a.m. - 1:00 p.m.

Other Team Members: Dr. Ashish Bavdekar,Dr. Suhas Wagle – Hepatology; Dr. Ashish Bavdekar – Pediatrics, Hepatology & Hepatic Transplantation; Dr. Pradeep Diwate – Movement Disorders & Neurology; Dr. Shrikant Kelkar – Ophthalmology; Dr. Vasudeo Parlikar – Psychiatry; Mrs. Vaishali Madkaikar – Dietitian; Dr. Arati Chaudhari & Mrs. Bharati Patil – Physical and Rehabilitation Therapy; Dr. Shruti Inamdar – Research Coordinator; Mr. Mahendra Hoge – Social WorkIndia – Mumbai


Jaslok Hospital and Research Center

Director - Dr. Aabha Nagral,
Consultant Adult and Pediatric Hepatologist
O-18, Bhavna Building 2nd floor
Veer Savarkar Road
Prabhadevi Clinic
Mumbai-400025
India
For appointments: (+91)22 24222160
E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.
Clinics for Wilson Disease Patients:
Monday, Wednesday and Friday: (4:00 p.m. to 6:00 p.m.)
For appointments, phone: 91-22- 24222160 (after 4 pm)

Other Team Members: Dr. Aahba Nagral – Hepatic Transplantation; Dr. Pettarusp Wadia– Movement Disorders & Neurology; Dr. Atul Ursekar– Ophthalmology; Dr. Fazal Nabi – Pediatrics; Dr. Amit Desai – Psychiatry; Suvarna Sawant – Dietitian; Dr. Ria Mansukhani – Physical and Rehabilitation Therapy; Dr. Priya Malde – Research Coordinator: Bakul Parulekar-Speech Therapy; Bhavna Shah-Social Worker.


Northwestern University
Director
Richard M. Green, MD
Chief, Division of Hepatology
Associate Professor of Medicine
Feinberg School of Medicine
675 N St Clair St. Suite 14-100
Chicago, IL 60611
Phone: 312-503-4667
Fax: 312-908-6192
E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

Appointments: 312-695-7950
Mickey Domiano

http://parkinsons.nm.org/wilsons-disease.html

Other Team Members: Tanya Simuni, MD - Associate Professor in Neurology; Danny Bega, MD - Instructor in Neurology; Daniel Ganger, MD - Associate Professor in Hepatology; John E. Franklin, MD -- Associate Professor in Psychiatry and Behavioral Sciences and Surgery; Michael M. Abecassis, MD – Director, Comprehensive Transplant Center, Chief, Division of Surgery-Organ Transplantation; Onur Melen, MD – Assistant Professor of Neurology and Ophthalmology; Saeed Mohammad, MD - Assistant Professor of Pediatric Hepatology; Joanna Blackburn, MD - Assistant Professor of Pediatric Neurology; Judy Fitzhugh, RD. LDN, CNSD – Dietitian; Santiago Toledo, MD – Assistant Professor in Physical Medicine and Rehabilitation; Karen Williams, BA – Research Coordinator; Pamela Palmentera, LCSW – Social Work; Lisa Kinsley - Genetic Counselor.


University of California at Los Angeles
Director - Jeff Bronstein, MD, PhD; Coordinator – Henrietta Salazar
UCLA Neurology Department
710 Westwood Plaza Suite C128
Los Angeles, CA 90095-1769
For appointments: Henrietta: (310) 206-9799
Fax: (310) 206-9819
E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

Other Team Members: Sammy Saab, MD – Hepatology and Hepatic Transplantation; Arik Johnson – Psychologist; Jeff Bronstein-Movement Disorders, Neurology; Joseph Demer, MD- Opthalmology; Dana Hunnes PhD, MPH, RD- Dietition/Nutritional Consultant; Diane Yang- Research Coordinator


University of Michigan Hospital
Director - Fred Askari, M.D., Ph.D.
Associate Professor
Liver Clinic
1st floor Taubman Center Area G
Ann Arbor, Michigan 48109
Phone: 800-333-9013
Fax: 734-763-4574
Appointments 800-333-9013
E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

Other Team Members: Jeffrey Innis, MD, PhD – Genetic Counselor; Fred Askari, M.D., PhD - Section of Transplantation and Hepatology, Martha Carlson MD, PhD – Pediatrics; Matthew Lorincz, MD, PhD (Adult) and Martha Carlson, MD, PhD(Pediatric) – Movement Disorder Specialist, Neurology; Jonathon Trobe, MD – Opthalmology; Scot Winder, MD – Psychiatrist; Elizabeth Kovan – Research Coordinatior; : Karen Kluin ,MS – Speech Therapy; Kelly Shehan,MS - Dietician


Seattle Children’s Hospital
Sihoun Hahn, M.D., Ph.D., Director
Pediatrics; Director, Biochemical Genetics Program
Seattle Children’s Hospital
4800 Sand Point Way NE, Mailstop: B-6594
Seattle, WA 98105
Phone: 206-987-7610
E-Mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

The pediatric team will see adult patients at the University of Washington. For information/appointments (pediatric and adult) please contact:
Mary Moran E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.
Appointments: Fax referral and records to (206) 985-3121

Other Team Members: Simon Horslen, MB ChB FRCPCH - Director of Transplantation, Pediatric Hepatologist, Pediatric Transplant Hepatologist; Renuka Bhattacharya, MD – Adult Hepatologist; Dararat (Pam) Mingbunjerdsuk, MD – Movement Disorder Specialist, Neurology; Ali Samii, MD – Adult Neurology; Avery Weiss, MD – Opthalmology; Nina de Lacy, MD, MBA – Psychiatry; Melissa Edwar, RD and Sarah Sullivan, RD – Metabolic Nutitionists; Andrea Barry-Smith – Social Work, Edie Anyieni, RN - Nursing; Genetic Counseling – TBD; Mary Moran – Program Administrator.


Yale University Medical Center
Dr. Michael Schilsky, Director
Yale University School of Medicine
333 Cedar Street/1080 LMP
P.O. Box 208019
New Haven, CT 06520-8019

E-Mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

Fed Ex Address:
One Gilbert StreetFMP Bldg.,
Room FMP 408
New Haven, CT 06519

For Appointments: Ms. Donna Christensen phone: 203-737-1592 fax: 203-737-1592

Other Team Members: Nigel Bamford, MD - pediatric neurologist, Sukru Emre M.D., David Mulligan MD, Manuel Rodriguez Davalos MD, Section of Transplantation and Immunology, Udeme Ekong MD, Pamela Valentino, MD – Pediatric Hepatologist, Pediatric Transplant Hepatologist; Elan Louis, MD, Daphne Robakis, MD – Movement Disorder Specialist, Neurology; Paula Zimbrean M.D. – Psychiatrists; Kisha Mitchell M.D. – Liver Pathologist; Karen Stavris – Research Coordination; Lenore Hammers LCSW – Adult Social Worker, Michael Joyce LCSW – Pediatric Social Worker; Anne Marie Rivard NPH RD- Registered Worker; Anne Marie Rivard NPH RD- Registered Dietician


Watch:   Yale Center of Excellence featured at the AASLD Liver Meeting

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Baylor College  -Texas Children’s Hospital and St Luke’s Hospital 

Center Directors: 
John Vierling, MD Adult Hepatology
This email address is being protected from spambots. You need JavaScript enabled to view it.
832 355 1400 (Office, 24/7)
713-610-2479 (FAX) 

Tamir Miloh, MD Pediatric Hepatology
This email address is being protected from spambots. You need JavaScript enabled to view it.
832-822-3671

Other Team Members:UNOS Medical Directors of  liver transplantation- Rise Stribling, MD Hepatology/Baylor-St Luke’s Medical Center (adult), Surgical Director of liver transplantation- John Goss, MD Transplant Surgery, Clinicians- Norman Sussman, MD Adult Hepatology/GI , Saira Khaderi, MD Adult Hepatology/GI, Ryan Himes, MD Pediatric Hepatology/GI ,Daniel Leung, MD, BS Pediatric Hepatology/GI, Joseph Jankovic, MD Adult Neurology/Movement disorder, Mered Parnes, MD, BA Pediatric Neurology/Movement disorder, Brendan Lee, MD, Ph.D. Genetics, David Coats, MD Ophthalmology, Ayse Arikan, MD Nephrology, Intensive care (Extracorporeal Liver Support), Nutritionist- Stacy Beer, MPH, RD, LD Liver Nutritionist, Neuropsychologist- Susan Caudle, M.A, B.A. Psychology, Social worker- Lucero Gonzalez, LCSW Social work, Child life specialist- Holly Peckover, MS, CCLS Child Life, Psychiatry- TBD Psychiatry Section, Genetic counselor- TBD Genetic counseling, Administration-  Sara Gonzalez-Quezada,Program administrator

 

 

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Common Queries and Questions

The course of liver disease in Wilson's disease stands in contrast to other forms of cirrhosis for many people. The chronic liver injury in Wilson's disease is caused by excess free copper, and the liver disease often stabilizes or even improves once the excess copper is treated with zinc acetate maintenance therapy. While some people do progress to need liver transplantation, others may actually see long-term improvement in their liver function over time. It is important to be attentive to issues such as immunizations for viral hepatitis, avoiding excess alcohol consumption, and treating complications of portal hypertension in order to give the liver its best chance to mend. Fred Askari, M.D., Ph.D. Assistant Professor Director, Wilson's Disease Center of Excellence Clinic at the University of Michigan
Generally, the brain is affected symmetrically with excess copper deposition, although symptoms can be worse on one side of the body than another. This may have to do with factors of asymmetric neurologic development, such as being right or left-handed. The copper is often seen most prominently in the basal ganglia, the area deep within the brain that coordinates movements. The face of the giant panda sign refers to a characteristic appearance of the basal ganglia in advanced Wilson's disease. This is a description of the appearance of the basal ganglia wherein one can get an impressionists image of the face of a giant panda. Fred Askari, M.D., Ph.D. Assistant Professor Director, Wilson's Disease Center of Excellence Clinic at the University of Michigan
High serum copper is not an indication of Wilson disease. Since most Wilson patients have a low ceruloplasmin they actually have a lower than normal serum copper. Ceruloplasmin is the protein that binds with copper to remove it from the body. It is the unbound (to ceruloplasmin) copper that is free to roam around the body and accumulate in organs causing Wilson disease damage. An elevated serum copper is more often due to an elevation of the level of serum ceruloplasmin since it contains ~90% of the circulating copper bound to it. Elevations of ceruloplasmin can occur with inflammation, in response to estrogen therapy and in pregnancy. Note: The exception to this is when there is severe liver injury (acute liver failure) caused by Wilson disease. This causes very large amounts of copper to be released into circulation and causes markedly elevated serum copper. When this occurs, patients are very ill and usually have jaundice (yellow eyes and skin color) and very abnormal lab results with respect to liver function and blood coagulation. - Michael Schilsky, M.D., Weill Cornell School of Medicine, WDA Medical Advisor
Hepatic: Asymptomatic hepatomegaly; Isolated splenomegaly; Persistent elevated AST, ALT; Fatty Liver; Acute hepatitis; resembling autoimmune hepatitis; cirrhosis (compensated or decompensated); fulminant hepatic failure Neurological: Movement disorders (tremor, involuntary movements); drooling, dysarthria; rigid dystonia; pseudobulbar palsy; seizures; migraine headaches; insomnia Psychiatric: Depression; neuroses; personality changes; psychosis Other symptoms: Renal abnormalities: amino-aciduria and nephrolithiasis; skeletal abnormalities: premature osteoporosis and arthritis; cardiomyopathy, dysrhythmias; pancreatitis; hypoparathyroidism; menstrual irregularities: infertility, repeated miscarriages From: A Diagnostic Tool for Physicians (3/04)
If the water is over 0.1 ppm (parts per million) (which is 0.1 mg/L), I recommend an alternative source. While 0.1 ppm isn't particularly hazardous, it indicates that significant copper is coming from somewhere, and at certain times or under certain circumstances the level might be quite a bit higher. George J. Brewer, M.D. Department of Human Genetics, University of Michigan Medical School
Yes. Since Wilson's disease often affects the liver, many Wilson’s disease patients cannot afford additional injury to the liver. Hepatitis A or Hepatitis B vaccine is as safe for Wilson's disease patients as it is for others. - H. Ascher Sellner, M.D.
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