VIVA! and GlobalHealthPR partner Spectrum Science’s involvement in the “Find the other 150” campaign has taken another step forward as another young girl was discovered living with Progeria in Johannesburg. We’d like to take a minute to introduce a First Lady, Miss Ontlametse Phalatse…

Ontlametse is a special young girl in many ways: she is bald, has arthritis and an array of other physical problems associated with ageing. She can’t go out and play because she might get seriously ill or hurt. Other school children are not always kind to her about the way she looks but she doesn’t care. She proudly accepts who she is, getting on with her life with aspirations to one day become a psychologist. Ontlametse is only 12 years old and she is living with the rare, fatal disease, Progeria, also known as Hutchinson-Gilford Progeria Syndrome (HGPS). It affects roughly one in every four-to-eight million children, causing rapid ageing and a shortened lifespan that usually does not exceed 13 years.

“I call myself a first lady because I’m the first black child with this disease … Which other black child do you know with this disease?” said Ontlametse.

And it’s true. Ontlametse is the first and only black child diagnosed with Progeria in the world, which makes finding her an invaluable addition to the “Find the other 150” campaign for the Progeria Research Foundation. Participation in the Foundation’s work at the Children’s Hospital Boston gives children like Ontlametse access to cutting edge treatments that are not yet commercially available, and connects them with local medical professionals and other families living with Progeria.

The Progeria Research Foundation offers a network of research-related programs to promote advances in the field for all children with Progeria, including clinical treatment trials. Nobody knows exactly how many kids in the world have Progeria but experts believe that in 2009 there were another 150 children worldwide living with Progeria that had not yet been diagnosed or identified, hence the launch of the Progeria campaign. VIVA! are passionate supporters of the global search for undiagnosed children living with Progeria, with the aim of helping them and their families gain access to specialised care and raise further understanding of the disease.

Children with Progeria are characterised by a disproportionately large head size, growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints and other symptoms related to old age. Symptoms may usually become apparent in the early years of childhood.

If you know someone or have treated a patient that has Progeria-like characteristics, please contact VIVA! on (+612) 9884 9100 or Audrey Gordon, President of The Progeria Research Foundation at agordon@progeriaresearch.org

Read related story: Identifying children living with Progeria