Kelly and Frans du Plessis, with their son, Juan, five, who has been diagnosed with infantile Pompe disease. Picture: Matthews Baloyi

Pretoria - What the founders of Folup saw was a means to bridge the gap between doctor’s consultations for patients living with chronic and rare diseases.

There was clearly a need for these patients to be able to understand their condition and monitor it without going to the doctor.

Folup – a play on the term “follow-up” – is a mobile and web-based health application which recently became available in South Africa following the company’s partnership with The Rare Disease Society of SA (RDSSA).

“Not only does the app assist patients in understanding their disease, but it facilitates better information for doctors,” says Folup co-founder Simon Spurr.

“Patients living with chronic or rare diseases normally see their doctor every six weeks; we provide a platform for patients to log their symptoms and feelings (between visits) and that information can then be fed to their doctors.”

Medical officer Geoff Appelboom, also a co-founder, began developing the technology in 2009 while working at the Neuroscience Research Unit of Columbia University in New York.

“The biggest challenge for any chronically ill patient is the length between seeing their doctor,” says Kelly du Plessis, chairwoman and founder of RDSSA.

“Now with the app, it’s almost like a health diary. With the pain tracker function, you can highlight which part of your body is experiencing pain.”

The app also tracks data such as blood pressure, and provides a glucometer, a wireless bodyweight scale and an activity and heart-rate monitor. Du Plessis, of Fourways – whose 5-year-old son Juan has Pompe disease, a rare inherited neuromuscular disorder that causes progressive muscle weakness – says the app is a “very useful” tool to track his health.

The disease is caused by a deficiency in the enzyme acid called alpha-glucosidase, which helps break down glycogen (a carbohydrate) into a form of sugar used for energy, which is stored in muscle cells throughout the body.

A deficiency in the enzyme causes an excessive build-up of glycogen, making the muscles – including the heart and lungs – become weaker over time.

“My son has seizures, and it’s very difficult to track the amount of seizures versus physical activity. The app has been a very useful tool because now we can anticipate certain triggers.

“The app is very user-friendly and quick. In the mornings, when he wakes up, I take his measurements with the activity tracker and can track whether he played soccer at school or what he ate and his medication measurements,” says Du Plessis.

Another salient aspect of the app, Du Plessis emphasises, is that it offers users a platform to communicate and share information with other patients.

It also allows doctors to research whether treatments and medications are working for their patients.

The app is available for download on Apple iPhone and iPad devices.

Spurr says it will evolve so that it can be made available to Android users as well. - Pretoria News