A large part of patient advocacy is about raising awareness of the illness they suffer. This is particularly true of rare diseases which few people get and few people know about.
After all the vast majority of aHUS patients had never heard of aHUS until they got it themselves. Many would not even be aware of Rare Diseases.
aHUSUK had done so much to raise the profile of aHUS and had notable results in the political arena as well as the media , TV, Radio, Newspapers and Magazines.
Within in a few days of her transplant in December my daughter had been filmed in our house for a TV news item about organ donation and the need for families to have a conversation about what they wanted to happen just in case it should happen to them.
Even so it was a enormous surprise when a story line about aHUS featured in a long running prime time British Saturday night “soap opera” called “Casualty”. Based on a fictional hospital in Holby City ( somewhere in Southern England ,although the series is actually filmed in Welsh Studios) each episode has two or three intertwined stories about medical conditions told in a dramatic way.
On 18 January 2014 aHUS was one of the medical conditions to be featured. It was about an aHUS patient Emily or “Em” as her family called her. This synopsis of the aHUS story line was posted on the aHUSUK website the next day.
aHUS “CAR CRASH” CLIFFHANGER
A limousine then takes Emily ,who is very non compliant with dialysis treatment, and her sister to her birthday party. During the journey ,because of an errant popping of a champagne cork the limousine ends up in the predicament shown in the featured photo.
It was while the Doctors were preparing for her rescue and her recovery that it became apparent that Em had a rare genetic disease called atypical Haemolytic Uraemic Syndrome and she was described as being “one in a million”.
They end up side by side in a Casualty Ward in A&E ( ER) , where concern about Nina’s kidney function deepens because one of her kidneys may have been damaged in the crash.
Just as you might be becoming increasingly concerned about an aHUS patient receiving a transplant without a complement inhibitor; the girls’ mother reveals that the drug had been approved to enable a transplant to happen.
But then she said after “18 months of hell ,tests and diagnosing and waiting , the drug supported transplant may not go ahead……. !”
We never heard what happened to Em and her sister but it was good to know the drug had been approved. Although at that date aHUSUK was not aware!
In some regions the You tube recording of the whole episode can be seen by clicking here
The earlier parts of the Reluctant Advocate can be read here.
An opportunity to raise awareness of aHUS and Rare Disease in 2019 is being provided by the aHUS alliance in its video for the 28 February. Tell your story and be included. Find out more here.