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.
Margaret Beaumont first noticed that her vision was changing in 2010. She found that she was having trouble reading the news at the bottom of the television screen. She was experiencing visual distortions that made it difficult to read text. She went to her ophthalmologist for her annual eye exam. At the exam, Margaret had… View Article
Debra Tosca was diagnosed with macular telangiectasia type 2 in 2010, at the age of 51. We spoke about her experience getting a proper diagnosis, adjusting to changes in her visual perception, and participating in the clinical trial. Debra’s path to receiving the diagnosis of MacTel was not straightforward. Debra went to see a retinal… View Article
On the Diagnosis: How long has it been since you were diagnosed with MacTel? I was diagnosed with macular telangiectasia type 2 in April 2014, close to age 60. The diagnosis was confirmed about two months later. What are some of the first MacTel-related changes that you noticed in your vision? I have had difficulties… View Article
On the Diagnosis: When were you were diagnosed with MacTel? I was diagnosed in January of 2013. What are some of the first changes you noticed in your vision? I first noticed how hard it was to read closed captions on TV. This was about 2-3 years before my diagnosis. At first I just thought… View Article
On the Diagnosis: How long has it been since you were diagnosed with MacTel? About two years, but about four and a half years since my optometrist noticed something odd with my retinas and sent me to an ophthalmologist. They misdiagnosed me with bulls eye cone dystrophy based on the dark circles around my maculae…. View Article