Interview with Margaret Beaumont
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 difficulty reading the letters on the eye chart at the 20/20 line, especially on the right side of the line. The ophthalmologist thought that she might have a macular pucker, so he referred Margaret to a retinal specialist. Two months later, she was diagnosed with macular telangiectasia type 2, or MacTel.
When she received the diagnosis of MacTel, the retinal specialist did not provide Margaret with much information. Instead, he wrote down the name of the disease and told her to research it on the internet. Margaret sought more information about her diagnosis, an investigation that led to travel within the United States.
Two months after the initial diagnosis, Margaret flew from her home in San Antonio, Texas to Baltimore, Maryland. She saw a retinal specialist at Johns Hopkins University who confirmed her diagnosis of MacTel. She was hoping to learn about potential treatments for MacTel, but was referred back to her local retinal specialist for monitoring.
In July 2012, Margaret traveled to the Scheie Eye Institute in Philadelphia to participate in the MacTel Project. There, she joined the MacTel Registry and filled out paperwork to donate her eye tissue in the event of her passing.
She hasn’t traveled for MacTel since joining the MacTel Project, but since that time she has become actively involved in MacTel support communities online. She is one of the original members of the patient-run MacTel Support Group on Inspire.com. On the origins of the Inspire group, Margaret says, “it began in July 2012 when one of our members asked a question about injections. Many of us found the group by doing a search on either Google or Yahoo. We now have over 6,000 posts in this support group.” The Inspire group includes people who have been diagnosed with either macular telangiectasia type 2 or type 1, though they are different diseases.
Margaret is one of three people who maintains a Facebook page for the MacTel Group, which is also a patient-run support group. Membership in that group has rapidly expanded, and includes people from all over the world. She says that “the majority of our members are from the USA, UK, and Australia. However, we also have members from Canada, South Africa, India, Brazil, the Netherlands, Germany, France, Italy, Norway, Sweden, Portugal, New Zealand, Spain, Mexico, Argentina, Poland, Macedonia, Israel, Egypt, Oman, Indonesia, Qatar, Denmark, Taiwan, Hong Kong, Nepal and Sri Lanka.”
Through support groups and social media, Margaret and other patients with MacTel share articles on MacTel that they find, news about degenerative eye disease research, and personal stories about their experiences with MacTel. Margaret has devoted thousands of hours to researching MacTel. She, and others, are eager for more reliable information about MacTel. “We are so thankful to the Lowy family,” Margaret says, “for promoting research into the disease. We also greatly appreciate the researchers and physicians who are working to find a cure for people with MacTel.”
As for her personal experience with MacTel, Margaret feels that she has been fortunate thus far. Her day-to-day life has not changed much since her diagnosis six years ago. She continues to drive, and can use the computer very well. She finds that she reads books less often because doing so makes her eyes feel tired. Margaret needs corrective lenses for both distance vision (e.g. driving) and for reading. She tried progressive lenses, but found that they have too much variation, and that they are difficult to use with MacTel. Instead, she uses two separate pairs of glasses. She acknowledges that “it’s a pain in the neck to carry around so many pairs of glasses, but it’s worth it.”
If she were to give advice to someone newly diagnosed with MacTel, she would tell them to “learn as much as you can about it. Know that the disease usually progresses very slowly, and time is on your side.”