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Help me regain my life (fund immune therapy for PANS PANDAS)
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$1,068 raised of
16 donations
Hi everyone,
As hard as it is for me to ask for help and as much as I hate doing it, l've reached a point where I truly need support.
I've been battling PANS/PANDAS (autoimmune encephalitis) since l was 9 years old - a condition where the immune system mistakenly attacks the brain, causing inflammation and a wide range of neurological symptoms. For most of my childhood and teenage years, I was in and out of hospitals, fighting to get some sense of a normal life back. My parents have already gone into hundreds of thousands of debt over the last decade, taking months off work to stay with me whilst I was hospitalised, to pay my medical expenses and medications.
After so many difficult years, things finally turned around. I became stable for over three years. I got to experience what it felt like to be healthy again - to work, to laugh freely, to enjoy life with my partner Mitch, and to finally make memories like travelling to Italy in May. For the first time in a long time, my future felt bright and full of possibilities.
Unfortunately, everything changed very suddenly.
At the end of my Italy trip and again when I returned home in July, I became unwell with multiple viruses, including strep. This triggered my immune system into another full relapse. For 5 months now I’ve been extremely unwell and struggling every day. I'm experiencing seizures, dystonia, tics, severe headaches, mental confusion, OCD and many of the debilitating symptoms that come with this disease.
High-dose steroids have helped for short periods, but as soon as the dose is lowered, my symptoms return quickly. My medical team now believes I need further treatment, such as IVIG and Plasmapheresis to stabilise my immune system and give me a chance to recover again.
Now I am an adult there are less doctors available here in Victoria that specialize and can give me the treatment I need, I am unable to get timely treatment locally. The wait to see an immunologist in Sydney is all the way in July just for the first appointment, and I simply cannot live like this for that long. I'm declining too quickly and the symptoms are too severe to wait months for help.
Because of this, my only real option is to seek treatment overseas, where IVIG and other immune therapies are more accessible. These treatments offer the best chance of stabilising my immune system and giving me back the quality of life I worked so hard to regain.
However, the costs of travelling overseas, medical care, and treatment are extremely high - and my family and I cannot manage them alone. This is why I've created this GoFundMe.
Any help, whether it's a donation, sharing my story or saying a prayer would mean more than I can express. Your support could genuinely change the course of my recovery and help me get back to the life I was finally starting to live.
Thank you from the bottom of my heart for taking the time to read this, and for any kindness you chose to offer.
