Newly developed app for 22q sufferers will change lives

HELP AT HAND: Isao and Zoe Hida of Appiwork and Maria Kamper show the new app for those with 22q11.2 Deletion Syndrome. Photo: CHRIS SEABROOK 060518c22q
HELP AT HAND: Isao and Zoe Hida of Appiwork and Maria Kamper show the new app for those with 22q11.2 Deletion Syndrome. Photo: CHRIS SEABROOK 060518c22q

A NEW app developed in the central west will help people with a common genetic condition manage their medical care. 

The 22q-Ordination app was formally launched this week at Gunthers Lane by the 22q Foundation Australia and New Zealand, along with Appiwork.

Bathurst resident and president of the 22q Foundation, Maria Kamper, said the app is for people who have 22q11.2 Deletion Syndrome.

22q11.2 Deletion Syndrome is the most common microdeletion syndrome in the world.

It is the most common cause of cleft palates and the second most common cause of congenital heart defects.

Ms Kamper said people living with the condition can use the app to co-ordinate their care, medical records, appointments and annual assessments across a lifespan.

It is expected to make a big difference, as families with a child or adult living with 22q often find it challenging to get support and a co-ordinated approach for the management of their needs.

“When my daughter Charli was diagnosed with 22q in 2004, at age four, there were not many people who knew about the condition and getting care was difficult and we the parents became the sole co-ordinators of all medical and education needs,” Ms Kamper said.

“We had to, without help, co-ordinate all the medical records, appointments, therapies, medicines and assessments our child required.

“We had large boxes of folders, records, and research papers that we took every time we met a new professional.

“We had to constantly replay our story to every person who worked with us and our child, as they most likely had never heard of the condition and not much has changed today.”

The app that has been developed by Appiwork will change all that.

“The app will empower families and people with 22q to co-ordinate and control all their records, appointments, treatment centres, physicians, therapists, medications and assessment reminders,” Ms Kamper said.

“This app encourages independence and is part of the planning for people with 22q living in adulthood.”

The app can be downloaded now from iTunes and Google Play.