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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
011 44 20 7566 2262
catherine.egan@moorfields.nhs.uk

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United States

California

Scripps Research Institute
La Jolla, CA USA
Martin Friedlander, MD, PhD
858-784-9138
friedlan@scripps.edu

Jules Stein Eye Institute, UCLA
Los Angeles, CA USA
Jean-Pierre Hubschman, MD
310-206-5004
hubschman@jsei.ucla.edu

Florida

Bascom Palmer Eye Institute, University of Miami
Miami, FL USA
Philip Rosenfeld, MD
305-326-6538
prosenfeld@med.miami.edu

Massachusetts

Massachusetts Eye and Ear Infirmary
Boston, MA USA
Joan Miller, MD
617-578-3257
joan.miller@meei.harvard.edu

Michigan

University of Michigan, Kellogg Eye Center
Ann Arbor, MI USA
Grant Comer, MD
734-763-5906
gcomer@umich.edu

New York

Manhattan Eye, Ear & Throat Hospital
New York, NY USA
Michael Cooney, MD
212 861-9797
m.cooney@vrmny.com

The New York Eye and Ear Infirmary
New York, NY USA
Richard Rosen, MD
212-979-4284
rrosen@nyee.edu

Ohio

Retina Associates of Cleveland, Inc.
Cleveland, OH USA
Lawrence Singerman, MD
216-831-5700
lsingerman@retina-assoc.com

Pennsylvania

Scheie Eye Institute
Philadelphia, PA USA
Alexander Brucker, MD
215-662-8675
ajbrucke@mail.med.upenn.edu

Utah

University of Utah Medical Center
Salt Lake City, Utah
Paul Bernstein, MD, PhD.
801-581-6078
paul.bernstein@hsc.utah.edu

Virginia

The Retina Group of Washington
Fairfax, VA USA
Robert Murphy, MD
703-698-9335
rpmurphy@comcast.net

Wisconsin

University of Wisconsin
Madison, WI USA
Barbara Blodi, MD
608-263-6646
bablodi@wisc.edu

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France

Hopital Lariboisiere
Paris, France
Alain Gaudric, MD
011 33 1 4995 2475
alain.gaudric@lrb.aphp.fr

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Germany

Universitats-Augenklinik Bonn
Bonn, Germany
Frank Holz, MD
011 49 228 287 5647
Frank.Holz@ukb.uni-bonn.de

St. Franziskus Hospital
Muenster, Germany
Prof. Daniel Pauleikhoff
dapauleikhoff@muenster.de
Bjorn Padge, MD
011 49-251-93308-0
bjoern@padge.de

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Israel

The Goldschleger Eye Institute
Tel Hashomer, Israel
Joseph Moisseiev, MD
011 972 3 5343462
Joseph.moisseiev@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
011 61 3 9929 8393
rhg@unimelb.edu.au

Lions Eye Institute
Nedlands, Australia
Ian Constable, MD
011 61 8 9381 0882
ijc@cyllene.uwa.edu.au

Save Sight Institute
Sydney NSW Australia
Mark Gillies, MD, PhD
011 61 412 060 313
mark.gillies@sydney.edu.au

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