Living with DiGeorge Syndrome: how social media can raise awareness

DiGeorge syndrome is a condition present from birth that can cause a range of lifelong problems, including heart defects and learning difficulties. The pathology is quite rare, as researchers believe it only affects 1 out of every 2000 to 4000 births, and symptoms may vary wildly depending on each individual, making those who suffer from the condition sometimes feel lost and alone. This is why Maria Teresa Gullino, also known as storiadiunaragazzarara on social media, has decided to share her journey and experiences living with DiGeorge syndrome. 

September 29 marks World Heart Day, in which it’s important to raise awareness of cardiovascular disease and the importance of taking care of your heart. Maria Teresa was born with a rare heart disease and is dedicated to sharing her story to help others better understand what life with a heart condition can truly be.

Maria Teresa’s story

Born in Messina in 1995, doctors immediately knew Maria Teresa needed urgent care. «I was all purple, a strange colour for a child, – Maria Teresa explains – so I was urgently taken to the Bambin Gesù Hospital, because everyone knows that Bambin Gesù is the best hospital for operating on very young children, especially newborns. From there I was diagnosed with DiGeorge syndrome, which is caused by a problem with a person’s genes, called 22q11 deletion».  

However, Maria Teresa grew up never really understanding the full extent of her condition. «I always knew that there was something wrong with me, but, until the age of about 25 years old, I always thought it was just a heart surgery». She started struggling at school in her early teens when the amount of homework became quite heavy, she would study hard but, when called upon by her teachers, she would freeze. «The problem is – she goes on – that what really needs to be done is raising awareness. By using my platform, my goal is to reach the teachers». 

The power of social media

Through Instagram, Maria Teresa has found a platform that has reached so many people around Italy. Inspired by others who have opened up online about their struggles with various conditions, such as Benedetta De Luca and Anna Maisetti, Maria Teresa opened her Storiadiunaragazzarara account and shared her story. The account has managed to educate, not only regarding DiGeorge syndrome, but also give those who live with a rare condition a deeper sense of belonging. 

«Although I love writing, as I find it therapeutic – she concludes – Instagram has become a tool for me to reach as many people as possible, to pass on my message, which I find is the most important thing».