New Best disease online support group launches

Posted: Wednesday 31 August 2022
Kelly Ephgrave smiling and looking into distance

People living with Best disease will be the latest to benefit from a new condition-specific support group launching later this month.

Best disease relates to a group of five related macular conditions caused by mistakes or mutations in a gene called BEST1.

The online Macular Society group is the latest in a series of condition-specific groups aimed to help people understand their diagnosis and speak to others sharing similar experiences.

Kelly (pictured), who was diagnosed with Best disease as an eight-year-old, explained the benefits of peer support, as the new group gets set to launch.

She said: “I think a Best group is incredibly useful as the disease affects everyone differently at all stages of life.

“Having a Best specific group would mean that there will be people who may have experiences and knowledge they can share to help others with the condition and their family members. I find peer support helpful in finding tips and ways to manage my sight loss.”

Colin Daniels, manager of the Macular Society’s Working Age and Young People’s Service, said: “Establishing a group specifically for people diagnosed with Best disease is so important to help those people and their families understand the condition, share experiences and support each other with their sight loss.

“At the Macular Society we are really proud of the support groups we run. We know from hearing from our members how valuable shared experience is and how helpful it can be to speak with others who have been through a similar diagnosis. This latest group will be one of many making a difference to the lives of people living with macular disease, whether they are newly diagnosed or have been living with the condition for a while.”

The virtual Best disease support group will meet monthly via Zoom, with registration now open for the first meeting on Monday 26 September at 7pm.

If you are living with Best disease, or supporting someone with the condition, Register for the group.

The Macular Society’s condition-specific groups aim to provide vital support to those living with rare macular conditions. There are existing groups for Sorsby’s Fundus Dystrophy, diabetic macular oedema and myopic macular degeneration.

Join the online, condition-specific community.