The Show With No Name - #ShowYourRare
30:56 · 2019
Send us a Message!
Welcome to 'The Show with No Name' Series 1, Episode 7, 28 February 2019. Dreamed up by Theonie Roussianos and Adaire Palmer to help people in your local community to raise their profile and encourage awareness and support for what matters to them and their communities. We also help not-for-profits, charities and service to connect with communities to raise brand awareness and help staff and volunteers working within them to become the best #BrandChampions they can be for their cause. To interact with us during the live broadcast, make sure you're watching over at the original source on Mytimetv.live here https://www.facebook.com/MyTimetv.live/videos/621757298296814/
It's Rare Disease Day and today we are chatting with two people who have been impacted by the same Rare Disease (which affects less than 2 in every million people) on opposite sides of the globe. Jeff Schmidt's daughter, Erica, was diagnosed with atypical Haemolytic Uraemic Syndrome (aHUS) when she was 22 after having contracted a virus she just never fully recovered from. After 15 months on dialysis and nine months of treatment with the most expensive drug in the world (eculizumab), Erica's results were astounding.
Also joining us is Gerry Roussianos (yes, Theonie's husband). He was diagnosed with aHUS in Janurary 2016, only days after his 40th birthday. He's had a few years of ups and downs, however due to the same magic bullet drug used by Erica, he managed to avoid the need for dialysis, however the illness has not been without its complications, including seizures he suffered due to infection when he almost lost his life days before Christmas 2017.
Jeff has been the driving force for support through the atypical HUS Families support group which welcomes patients and their families from all over the world, and the aHUS Alliance, and has been a stellar support for Theonie especially, reaching out personally when he saw in his Facebook feed that Gerry was in hospital again, or there was just a simple bump in the road.
Theonie has been a driving force to make a difference to others with kidney disease and diabetes and has raised almost $85,000 for Kidney, Transplant and Diabetes Research Australia over the last two years across four events, and is continuing this year with @AdelaideKidneyBoganBingo on 6 April and the Adelaide Kidney Ball on 10 August 2019.
For more information on Bogan Bingo and to connect with Gerry and Theonie's journey, go to their page Gerry & Theonie Roussianos: Everybody’s Other Favourite G&T.
Tune in to hear these incredible stories and feel free to #ShowYourRare this Rare Disease Day.