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Patient Perspectives

MacTel is a relatively rare disease.  As such, there is limited information available to patients who have been recently diagnosed and are looking to learn about MacTel.  The patient perspectives featured here are an opportunity for people with MacTel to share their stories of living with the disease, and how they have adapted to deal with changes to their vision.

If you would like to share your MacTel story, please contact us.

Interview with Margaret Beaumont

August 2016

Margaret Beaumont was diagnosed with macular telangiectasia type 2 in 2010. She is very active in MacTel support communities online. We spoke about her experience getting a diagnosis, her experience with MacTel, and growth of MacTel support communities online.
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Interview with Debra Tosca

August 2016

Debra got into photography after her diagnosis, during the summer of 2012, when her husband bought her a professional digital camera. On becoming a photographer she says, “It sounds ironic, because you’re losing your vision, so why would you become a photographer?” For Debra, the camera is like her bionic eye. “I can see so good through the camera lens. The camera acts like the eye, and it fills in the areas that I can’t see well. The camera focuses for you, so you don’t have to focus.” She uses a very big computer screen to enlarge the photos. Seeing the world anew through the camera lens, she says, “I was just amazed.”
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Interview with June Blades

June 2016

Use the internet to educate yourself about MacTel. Try using humor to educate your family and friends about MacTel. I like to have fun with the “words” I see on billboards. If MacTel takes away a hobby or activity you enjoy, find another that is not dependent on good eyesight. Take advantage of technological gadgets that can assist people with vision impairment. Take the time to familiarize yourself with web sites devoted to the vision impaired, such as Vision Australia. Look for online MacTel buddies who will support you when needed. Keep learning new skills, developing new friends and get out and about in the community.
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Interview with Kathy

May 2016

I seemed to go through several stages of grief after the diagnosis, cried a lot, felt helpless and defeated. However, as time passed I learned more about the disease. I also found out about the MacTel Project. I was able to get evaluated through the MacTel Project and have the diagnosis confirmed. I no longer feel hopeless. I am learning to adapt and have hope that the research done by the MacTel Project will stabilize my declining vision.
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Interview with Pete Kellett

April 2016

Take charge of your health care, and the broader life story that you find yourself in. Seek out whatever online information is available. Connect with an expert from the nearest MacTel research site for diagnosis and observation/treatment. Create or join a support group of people who understand and who care. This will preferably include someone with vision problems, ideally with the same disease. Enjoy, and make the most of, the periods of stability in your vision.
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United Kingdom
Moorfields Eye Hospital

London, United Kingdom
Cathy Egan, MD

Emily Magnus
Tel: 020 7566 2117
Email:Emily.Magnus@moorfields.nhs.uk
 

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United States

California

Scripps Research Institute

La Jolla, CA USA
Martin Friedlander, MD, PhD

Jennifer Trombley, RN
Tel: 858-554-6678
Email: Trombley.jennifer@scrippshealth.org

Jules Stein Eye Institute, UCLA

Los Angeles, CA USA
Jean-Pierre Hubschman, MD

Veronika Sadykov
Tel: 310-794-5596
Email: Sadykov@jsei.ucla.edu

Mary Crowley
Tel: 310-267-5278 Email:
Email: MECrowley@mednet.ucla.edu

University of California – San Francisco

UCSF Department of Ophthalmology
San Fransciso, CA USA
Jacque Duncan, MD

Arshia Mian
Tel: 415-476-0444
Email: arshia.mian@ucsf.edu

Florida

Bascom Palmer Eye Institute, University of Miami

Miami, FL USA
Philip Rosenfeld, MD

Cristina Lage-Rodriguez
Tel: 305-326-6117
Email: clage@med.miami.edu

Georgia

Emory University

Atlanta, GA
Jiong Yan, MD

Jayne Brown
Tel: 404-778-4430
Email: jmbrown@emory.edu

Louisiana

Retina Associates New Orleans

New Orleans, LA USA
Stanislav A. Zhuk, MD

Corey Marvel
Tel: 504-456-9061 ext 1111
Email: cmarvel@retinaassociates.org

Melinda Mitchell
Email: Melinda.mitchell@retinaassociates.org

Massachusetts

Massachusetts Eye and Ear Infirmary

Boston, MA USA
Joan Miller, MD

Patricia Houlihan
Tel: 617-573-3646
Email: patricia_houlihan@meei.harvard.edu

Michigan

University of Michigan, Kellogg Eye Center

Ann Arbor, MI USA
Grant Comer, MD

Pam Campbell
Tel: 734-936-0138
Email: pamtitus@med.umich.edu

New York

Vitreous, Retina, Macula Consultants of New York

New York, NY USA
Lawrence A. Yannuzzi, MD

Renata Salgado
Tel: 212-452-6965
Email: rsalgado@vrmny.com

The New York Eye and Ear Infirmary

New York, NY USA
Richard Rosen, MD

Meliza Unson
Tel: 212-979-4672
Email: munson@nyee.edu

University of Rochester

Rochester, NY USA
Mina Chung, MD

Lisa Latchney
Tel: 585-273-2742
Email: Lisa_latchney@urmc.rochester.edu

Ohio

Retina Associates of Cleveland, Inc.

Cleveland, OH USA
Lawrence Singerman, MD

Diane Weiss
Tel: 216-831-5704 Ext. 244
Email: dew@retina-assoc.com

Cincinnati Eye Institute

Cincinnati, OH USA
Daniel Miller, MD

Megan Kingdon
Tel: 513-569-3669
Email: mkingdon@cincinnatieye.com

Pennsylvania

Scheie Eye Institute

Philadelphia, PA USA
Alexander Brucker, MD

Sheri Drossner
Tel: 215-662-8177
Email: Sheri.Grand@uphs.upenn.edu

Texas

Retina Research Center

Austin, TX USA
Chirag Jhaveri, MD
Brian Berger, MD

Ivana Gunderson
Tel: 512-279-1251
Email: igunderson@e-retina.net

Utah

University of Utah Medical Center

Salt Lake City, Utah
Paul Bernstein, MD, PhD.

Kara Halsey
Tel: 801-213-2034
Email: Kara.halsey@utah.edu

Virginia

The Retina Group of Washington

Fairfax, VA USA
Robert Murphy, MD

Irene Fanous
Tel: 703-564-7519
Email: ifanous@rgw.com

Wisconsin

Medical College of Wisconsin

Milwaukee, WI USA
David Weinberg, MD

Ellie Dorsey
Tel: 414-955-7854
Email: edorsey@mcw.edu
 

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France
Hopital Lariboisiere

Paris, France
Alain Gaudric, MD

Abir Zureik
Tel: 33 1 49 95 64 86
Email: abir.zureik@aphp.fr
 

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Germany
Universitats-Augenklinik Bonn

Bonn, Germany
Frank Holz, MD

Simone Müller
Email: Simone.Mueller@ukbonn.de

Kerstin Bartsch
Email: Kerstin.Bartsch@ukbonn.de

St. Franziskus Hospital

Muenster, Germany
Prof. Daniel Pauleikhoff

Elke Attenberger
Tel: 0251-9352758
Email: elke.attenberger@uveitis-zentrum.de
 

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Israel
The Goldschleger Eye Institute

Tel Hashomer, Israel
Joseph Moisseiev, MD

Rinat Rashty
Tel: 972-3-530 2877
Email: Rinat.rashty@sheba.health.gov.il

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Switzerland

Klinik und Poliklinik fur Augenheilkunde
Inselspita
University of Bern
Bern, Switzerland
Sebastian Wolf, MD, PhD
41 31 6328503
sebastian.wolf@insel.ch

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Australia
Center for Eye Research Australia

Melbourne, Australia
Robyn Guymer, MD

Melinda Cain
Tel: 61 3 9929 8396
Email: mcain@unimelb.edu.au

Emily Caruso
Tel: 61 3 9929 8113
Email: emily.caruso@unimelb.edu.au

Lions Eye Institute

Nedlands, Australia
Ian Constable, MD

Toni Busby
Tel: +61 08 6382 0582
Email: toni.busby@lei.org.au

Diana Bowman
Tel: +61 8 9381 0777
Email: DianaBowman@lei.org.au

Save Sight Institute

Sydney NSW Australia
Mark Gillies, MD, PhD

Antoinette Dezoysa
Tel +61 2 9382 7309
Email: Antoinette.dezoysa@sydney.edu.au

Sharon McKenzie
Tel +61 2 9382 7309
Email: sharon.mckenzie@sydney.edu.au

 
 

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Netherlands
Radboud University Medical Center

Nijmegen, Netherlands

CB Hoyng, MD
Tel: +31 (0)24 36 15255
Email: trialcentrum.ohk@radboudumc.nl

Asha Kalisingh
Tel: + 0243613212
Email: asha.kalisingh@radboudumc.nl
 

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