Shakira’s stage 4 lupus nephritis journey

Hello,

I am Shakira Bratten a 20-year-old lady that suffers from an illness, I was diagnosed with in 2023. Stage 4 lupus nephritis. Which is an autoimmune disease and kidney disease, where my immune system attacks my kidneys and tries to ‘delete’ them causing them to become leaky and I retain fluid through out my body. This illness I have affects me in many ways from not being able to attend work for a full day and can make very simple tasks become very hard for me. Being on many medications and an infusion to try and stop my flare ups. The lupus flare up are from being it a lot of pain, to retaining a huge amount of fluid and causing me to feel sick.

The medications I am on are very expensive I pay about $600 a month, the number of trips to Perth, can be more the 4 trips in a week, the accommodation which is $260 a night that we must pay to stay in Perth for my appointments, sometimes I have to stay in Perth for a few days depending on how the treatment affects me. Even having a lupus flare up results in a trip to Perth to get seen to by my specialist to get checked out. Not being able to go to the regular GP or have anything changed by a GP without liaising with a renal specialist makes things very hard.

Due to my medications not keeping my Lupus nephritis at bay the specialist has decided to start a new infusion, which is a chemotherapy. Therefore, there are many risks to having this medication, such as my fertility being affected, bleeding into my bladder and the risk of bladder cancer. This meaning I have been seeing a fertility specialist in Perth, to discuss harvesting my eggs and getting them frozen. At this stage somethings will be subsidised but there is still an out of pocket cost we must pay, for the anaesthetist and the procedure to happen. This will roughly take about two months, so for now the chemotherapy has been put on hold.

I am setting up this page to receive any help during my treatment journey. It has been a very hard journey over the past 15 months and still is very challenging every day, making many simple tasks harder for myself. This has been a very expensive exercise. My family members taking time off work during there work weeks to travel to appointments, support me.

I’m asking for some help to get me through my challenging battle I’m dealing with my treatments, medical appointments and travelling to and from appointments. Any donation will be greatly appreciated.