'Representing the Deafblind Community in Victoria'

Posts from the ‘Medical’ category

Covid safety workshop

Deafblind Victorians face unique challenges with Covid. For an overview of the issues, see our post from last November.

To help members stay safe and get support during the pandemic, Deafblind Victoria and SARU (the Self-Advocacy Resource Unit) ran a Covid safety workshop on 23rd June 2022. The workshop was facilitated by Miranda Darrer from SARU and Jasper Cleland from DBV. Members paired up to talk about their experiences of masks, testing, isolation, supports and access to information. They learned about which kinds of masks give you better protection, and they were able to try different masks and take them home.

Two guests attended to provide more information:

  • Bec Swansson from Able Australia answered questions about how Covid rules affect Deafblind people’s access to commguides
  • Christy Walsh, a Disability Liaison Officer (DLO) explained that each region in Victoria has a DLO who can help you access testing and treatment
click for photos

Medical trial – new drug for Usher Syndrome RP

DBV member Joseph Heenan visited DBV today to share news about a medical trial that he is involved in. Doctors are testing a new tablet to see if it can help stabilise Retinitis Pigmentosa (RP) for people with Usher Syndrome. In the video, Joseph talks in Auslan about the trial. A transcript is below. Joseph doesn’t know if he is taking the real medicine or a placebo! If you want to join the study, click here for more information.

Joseph Heenan talks in Auslan about a clinical trial of a new medicine for RP and Usher Syndrome

Transcript: Hello, my name is Joseph Heenan. I have Usher Syndrome. I’m visiting to tell you about a new medial trial for people with Usher Syndrome. Here are the tablets that I will take for 2 years. You can join the trial too – download the flyer and send them an email to make arrangements. You can test the medicine for 2 years to see if it helps keep your RP stable. It won’t improve your condition but it might stop it from getting worse. Good luck!