The power of togetherness: combating extreme isolation when faced with a rare diagnosis

When faced with a diagnosis of a rare eye condition, the chances of meeting someone who shares it are slim, and meeting someone your age is also rare. 

Our funding supports in-person events and an online community for conditions where the eyes are small, underdeveloped or missing. The charity is MACS, short for Microphthalmia, Anophthalmia, and Coloboma Support.

Through local events and a Facebook community, thousands of families are discovering people within reach, and the results are fantastic. MACS is the only UK organisation supporting people affected by microphthalmia, anophthalmia and coloboma. 

Bringing people with a rare condition together

Sharon plays matchmaker to people of all ages, but most often families who have welcomed a new baby. “These families need the most support,” says Sharon, “they speak about traumatic births and babies being whisked down corridors with little explanation or simply being ignored and shrugged off as anxious mothers by midwives and doctors. They are the people who face extreme isolation and are consumed by worries for their baby’s future.”

She matches people up as best she can based on condition, age, location and any specific requests made by families or individuals. She encourages them to deepen connections through peer groups and join MACS's Facebook page.

The community page offers information on the services and further peer support. It’s with great delight that Sharon sees families getting on like old friends when they meet at MACS’ regular in person events around the country. 

Connections that span generations 

Sometimes, people that don’t on paper seem to be a match hit it off. Sharon describes a match that took place spontaneously at a recent in person event in Nottingham, “A family was desperate for their little boy of nine years to meet someone his age, but it turned out they met a 32-year-old.

“This man has a successful career. The little boy’s parents are thrilled because one of their biggest worries is if their child will be able to work one day and live an independent live. There’s no better way to show them that than in real life. This is the power of togetherness.”

Combating the isolation brought on by the diagnosis of a rare condition is why Fight for Sight is funding MACS. Especially as Sharon has set up groups for Dads and extended family who are often left out of conversations and moments of support. A recent Dad group brought members to tears as they relayed stories of their newborn babies being whisked off in incubators and no one explaining to them what was happening.

“Parents go through the seven stages of grief. When they are first signposted to us (often after fighting for a proper diagnosis) they feel immense grief and are unable to see a bright future for their children.

“This is when I tell them about a story of a mother we supported. This mother was the rock of her family, a couple of times a day she would step out to walk the dog. On these walks she’d call us and be in tears throughout the call, just before she arrived back home, she’d pull herself together, dry her tears and go back to being the family rock.

“She was so traumatised in the beginning but she’s now, several years later, one of the most helpful and responsive members on our Facebook page, a font of knowledge and a whizz at signposting parents to events and information. I love being able to tell these parents who feel like they’ll never going to smile again, that they too will reach that stage.

“Another thing I like to do is show parents a map of Great Britain with blue and green dots (for new members) where our members (blue dots, 3,500 at time of print) are based around the country. There’s instant relief in their voice because they realise, they’re not alone. My daily objective is to ensure that map gets more green dots (new members).”