Healthcare

MS Xplained: My story in an app

MS Xplained is an introductory guide to the complex world of MS., in the form of an app.

Medicine X_MS Xplained_Ladywithms

MS Xplained: An app about MS

Being diagnosed with MS is hard

Ever been to the doctor and not understood what they said? It happens. And it definitely happens when someone says you have MS… The only coherent question I had when my diagnosis was confirmed was ‘can I still drink alcohol and eat cheese?‘ (yes, in the face of the unimaginable that really was my question).

Despite normally having myself together (with the ability to ask relevant questions), being told you have MS is overwhelming. There are questions you need to ask, and information you need to understand at a practical level. After all, it is your body and your disease.

But there is introductory information available

MS Xplained is MS explained by real doctors for real people with an MS diagnosis, in the form of an app. It is based on real MS stories – in this case, mine and Melissa’s. The goal is to help those newly diagnosed understand the disease and the treatment options available.

This app explains MS in a way everyone can understand. There is no judgement, and no doctor-speak. It is just the information you need to know to help you – or your friends and family – get the basics right.

As someone with MS, I can say this information would have helped me when I was diagnosed. Once you understand this information, you can choose how far you take it and decide what else you want to know (even if all you can consider wondering about is whether you can eat cheese).

Download it for free here.

 

Medicine X worked with MS Australia and MS Research Australia to develop the ‘MS Xplained’ app. Full disclosure: I am a National Advocate for MS Australia, and I did not receive any fee or reward for sharing my story or writing this post.

We Don’t Talk About featured on Channel Ten News in Sydney

Channel Ten News in Sydney featured my We Don’t Talk About project over the weekend.

The purpose of We Don’t Talk About is to start conversations about the hard things associated with chronic and invisible diseases (including our very Multiple Sclerosis). It is a forum to share the darker thoughts – especially those thoughts that don’t often cut it as dinner table conversation: about illness and disease, relationships and family, finances, sex, end-of-life care and dying.

The goal is not to be bleak; it is to be honest. Cathartic, even.

If you know anyone with a chronic or invisible disease, please share the site with them. They may want to tell their story. If they do, they can remain as anonymous or be as public as they like. Or you can use this site to start a conversation with those you love – either about their condition or yours.

The project was featured on the Channel Ten News in Sydney over the weekend. Thanks go to Frank Lyons, who shared his story living with Motor Neuron Disease, and Rob Miller, who shared his on living with Parkinson’s disease.