Sonia and Susana
Identical twins Sonia and Susana, share their story of living with PKD and the Facebook post that led to receiving the greatest gift of all!
Born and raised in Portugal, the sisters were diagnosed aged 25 following ultrasound scans that were performed when Susana presented with high blood pressure; often one of the first signs of PKD. Although there was no known family history, it’s possible they inherited the disease from their dad, who sadly died from a stroke.
It was a shock diagnosis, which over the following years has had the biggest affect on their emotional wellbeing “We both feel this disease is like a ‘ticking bomb’ in that we never knew how long one has before starting dialysis or how long we’d be on the waiting for a kidney transplant. Workwise we’re lucky to work for the NHS which provides lots of support” they say.
Not only are the sisters joined by genetics (Identical twins come from the same fertilised egg and therefore share identical genetic profiles) both work in London as radiographers for the NHS!
As time went by, although both experienced a gradual decline in kidney function Sonia's progressed at a faster rate than Susana - which could be explained by environmental factors such as diet and blood pressure control although these remain largely unknown - leading her to require peritoneal dialysis (PD) by 2016. It was a tough time for her, physically and emotionally. Thankfully, as she explains “Although PD had to be done 3 to 5 times a day, I always had tremendous support from my renal doctors and nurses, and from my employer”.
It was then, after noticing a Facebook status from Susana thanking friends for Sonia's 'get well' flowers during her treatment, that Ali - a former student and old friend - got in touch. And life took a dramatic turn for the better!
Ali Dawson - a radiographer, now aged 33 – was taught by Sonia at King's College Hospital in London where the pair also became friends before losing touch. Yet despite having little contact for a number of years, when he realised the severity of her illness, Ali immediately offered to come to her aid.
Sonia was stunned by his brave and generous offer to donate a kidney, but despite initially telling him he was 'too young', Ali was persistent - He wanted to do what he could to help, and to thank his former teacher for inspiring him to become a radiographer. “After asking my blood group, he immediately sent me a picture of the card showing his, which is a match for mine!” Sonia explains.
Indeed, tests proved he was a perfect match and five months later it was full steam ahead. "It was a long and very emotional process and still today I can’t believe someone like him exists. Neither my family nor myself will ever have enough words to show how grateful I am. He is my family and we are connected for life" she says.
Consultant Transplant Surgeon Mr Nikolaos Karydis, who Sonia publically praised at our London Information and Support day in February this year, performed the transplant on the 30th May 2017 at Guy’s Hospital. “I’ll never forget the time Mr Karydis took to visit me after a long shift on the night before my surgery just so I could see the ‘face’ of the person who’d be performing the transplant, as I’d be anaesthetised next time we ‘met’!” Sonia told a rather emotional audience that day. Sonia (left), Nikolaos and Susana are shown above.
Sonia and Ali’s recovery went well. Sonia is now fighting fit and said the pair feel like 'brother and sister' thanks to his priceless gift - which she named 'Mini Ali'. They’ve formed a wonderful bond that will last forever.
For Susana - whose function is now just 13% and is on the transplant waiting list - living through her sister’s PKD experiences has had both a positive and negative effect. “Witnessing Sonia going through all of it has helped me in some aspects as I have now a higher knowledge regarding dialysis and transplant treatments. However I do feel as though I’m going through it twice, which does have an impact on my emotional wellbeing" she says.
We're in no doubt that these remarkable sisters are and will continue to be a great source of strength for each other as they continue on their PKD journey, both agreeing that "Living with PKD is a struggle day to day - as a hereditary, incurable disease, we just don’t have any control over it. However, having a strong foundation of support from the family and friends is a big help".
We wish Sonia a long and happy future with 'Mini Ali' and are keeping our fingers crossed that Susana receives a transplant very soon. Huge thanks to Ali Dawson for his incredible gift of life, and for continuing to this day as an active ambassador for living organ donation. Ali is shown below with the twins.
If you'd like to learn more about living organ donation, please see here