26 year old Lara Casalotti: a human rights campaigner and blood cancer survivor is encouraging others to take time out of their busy schedule to lend a hand in the fight against blood cancer and support the #LetsNailBloodCancer campaign.
When were you diagnosed?
I was doing research abroad in Thailand and I would often get extremely tired and have a dull aching pain in my leg. I put it down to being a bit out of shape and thought that the pain in my leg was from a trapped nerve. After the pain persisting and then spread across my back and down the other side of my leg I was encouraged to go to the doctor by my aunt.
In December 2015 I received the most shocking and life changing news. I was told the leg pain and tiredness I was feeling was in fact an aggressive form of acute myeloid leukaemia (AML) and that a stem cell transplant would be my only chance of survival.
How did you feel when you received this news?
It was a devastating blow. I was studying for my Masters in Global Migration and making plans for my future. My diagnosis changed everything in a heartbeat.
How difficult was it finding a blood stem cell donor match?
Due to my Chinese-Thai-Italian heritage it was always going to be a challenge finding a suitable donor. One in three people in need of a blood stem cell transplant are lucky enough to find a match within their own family.
My only brother was tested but unfortunately he was not a genetic match, which meant my only hope of finding a matching donor was from a stranger.
The doctors warned me that the chances of finding a matching donor from an unrelated person would be slim. At the time, just three per cent of registered donors were of mixed race heritage making it even tougher.
Thankfully this percentage has slowly increased but there is still an urgent need for more black, Asian and mixed race people to register as potential blood stem cell donors.
Why did you launch the #MatchforLara campaign?
I watched the fear and desperation consume my family and friends, they were so worried that a match wouldn’t be found for me and they wanted to do everything they could to give me the best possible chance.
We decided that we needed to do something to get more ethnically diverse people to register as potential blood stem cell donors and decided to launch a social media campaign called #Match4Lara.
Working with DKMS, a blood cancer charity and other organisations the #MatchforLara evolved with the ultimate aim to encourage people to sign up a potential lifesaver and help diversify the register.
Not only was it my best chance of survival but it would help other black, Asian, or mixed ethnicity people find a matching blood stem cell donor in the future too.
Everyone worked so hard and, astonishingly, thousands of people, across the world, came forward to register. We estimated that in total 50,000 people globally signed up in response to the campaign.
How did you feel when a matching donor was found for you?
I was elated but also knew how hard the next steps were going to be. There were so many thoughts and emotions running through my head.
One thing that was particularly hard to come to terms with was that my fertility had been damaged by the treatment and I wouldn’t be able to have children. Knowing that I had been robbed of something that I had always looked forward to was devastating.
What happened in the lead up to the transplant?
I had nine days of preparatory chemotherapy and total body irradiation before the transplant day. It completely wiped me out and I couldn’t wait to finally have the stem cells.
The transplant procedure itself was relatively simple and I received my donor’s stem cells through a drip and the whole thing was over in 30 minutes.
When did you receive your lifesaving transplant?
In March 2016 I celebrated my ‘second birthday’ when I received a lifesaving stem cell donation from a selfless stranger.
All I know is that my donor was from Germany and in honour of receiving their stem cells – I listened to Beethoven and ate German chocolates during the transplant procedure!
Being post-transplant what has changed in a year?
The first 100 days after transplant is always the most difficult but I was fortunate enough not to experience too many of the side effects. I was so happy to be home, to sleep in my own bed and return to some semblance of normality.
I had to wait another three months until my immune system was strong enough to allow me to go back to my old life of studying and part time work.
I always had to remember to wash my hands religiously, avoid anyone with an infection and crowded public places, including public transport.
I am adapting to a new normal . For example, I’ve learnt to worship the sun, whilst staying in the shade as the radiation has left me more susceptible to developing skin cancer.
One year on, although it’s been a rough ride, I am now well, and have even started a new job.
Why are you supporting #LetNailBloodCancer and DKMS?
I’m proud to support DKMS who do incredible work for people with blood cancers searching for their lifesaver. I wanted to give something back in any way, shape or form, so being the face of the #LetsNailBloodCancer campaign seemed like the perfect way to help lend a hand.
Every patient deserves a second chance of life and I want to help make that happen.
What would you say to others that aren’t on the DKMS register?
I wouldn’t be alive today if a life-saving blood stem cell donor hadn’t been found for me.
I know, first-hand, how vital it is that we get more people to register as potential blood stem cell donors. My medical team likened looking for my donor to ‘searching for a needle in a haystack’.
But thanks to that wonderful person who registered, I’ve got a second chance of life. So please take the time to register – it really does makes such a difference.
If you had the chance to meet your donor what would you say to them?
I am immensely grateful to my donor who I hope to thank in person one day.
I feel so lucky that a donor was found for me and to have received a timely transplant – I will never be able to thank them enough.