When I read about Sarah, an Australian traveling all the way to Chicago for an experimental treatment at Northwestern Memorial Hospital to cure her recently diagnosed multiple sclerosis, I knew that I wanted to interview her. Luckily for me, Sarah is as sweet and generous as can be.
When were you diagnosed with MS?
“I was diagnosed while in the hospital having had my baby boy, Oliver, on 30th January this year. My official diagnosis date is 5th February.”
What were your first symptoms?
“I first got sick August 2012 – I had optic neuritis, leg weakness, extreme fatigue, dizziness and terrible migraines. I had an MRI, but my former neurologist felt it did not indicate MS. At the time I did not even consider MS.”
When did you learn about Hematopoietic stem cell transplantation (HSCT)? (For those that don’t know; HSCT involves the intravenous infusion of autologous or allogeneic stem cells to reestablish hematopoietic function in patients whose bone marrow or immune system is damaged or defective.)
“I learnt about HSCT from seeing the Kristy Cruise story on 60 minutes Australia. At the time, I was still going through denial about my MS. Seeing Kristy, and realising that it was like me on a bad day, snapped me out of denial and into research mode.
Through the DIAD website and Moving Mountains, as well as support from online groups, I started seriously considering non myleoblative HSCT. I enquirered about the only trial available in Australia at St Vincent’s Hospital. I was not a candidate, due to having low disability, and the treatment was myleoblative, which I had decided wasn’t for me.
I encourage anyone who is interested in HSCT to download Kristy Cruise’s book as your starting point. It is easy to understand and gives you all the steps you need for further research.”
How did you know HSCT was right for you?
“I knew it was right for me when I read Dr. Burt’s criteria for his trial and realised that I was a good candidate. Also, when I read his journal from Lancet and the results he was having. I also watched his talk to MSRA, and it made sense to me. The risks I was accepting on drugs seemed a lot worse than HSCT.”
“As I mentioned before, St Vincent’s is the only trial is Australia of HSCT. It is currently myleoblative, and they are only accepting people who have higher disability than me or have failed more drugs.
HSCT should be available to Australians, and I really wish I didn’t have to leave my family, friends, and, in particular, my baby boy, Oliver. However, I am confident that I will receive the best care in the world from Dr Burt and his team.”
What will the treatment involve while you are here?
You can see a complete schedule of October, November and December from Sarah’s website, Hello Sunshine. The grueling months include chemotherapy, injections, antibiotics, stem cell harvest, rest, transplant and more chemo.
I love that you will be home on Christmas Day! That is the best gift ever.
Thank you Sarah for taking the time to speak to me. I am inspired by your determination and fight. Please send Sarah all your well wishes, good vibes and words of encouragement below. I will make sure she sees each and ever one of them.
All photos courtesy of Sarah Tilbury.