The CJD Support Network Committee has been proud to recently welcome Dr Diane Ritchie as a member. Diane is a researcher who works at the National CJD Surveillance Unit in Edinburgh. Recently, Diane invited Toby – the son of network member Martine – to the unit for two days. Toby talks about his time at the unit below…
My name is Toby, and I have just finished the first year of my A-levels where I am studying biology, chemistry, and philosophy. I am hoping to go to university to study biochemistry, and perhaps start a career in medical research. My grandma, unfortunately, passed away from sporadic CJD at the end of 2021. My mum, aunt and grandpa attended the Family Support Meeting in September last year where they met Dr. Diane Ritchie who very kindly offered to host me on a trip to Edinburgh to see the National CJD Surveillance units at Western General Hospital and the Royal Infirmary.
Visiting the CJD Surveillance and Research Unit in Edinburgh was a deeply insightful experience. Led by Dr. Ritchie, I was shown, up close, the process and efforts that go into diagnosing CJD including the meticulous scientific techniques that are required to provide a clear diagnosis. This involves carefully examining brain tissue to identify the presence of incorrectly folded prion proteins to determine if the patient passed away from CJD; identifying whether a patient contains a certain gene that is more susceptible to the disease; and looking at the contents of cerebrospinal fluid (CSF) to identify if the incorrectly folded prion proteins are present. I was further introduced to some of the forensic scientists at the Royal Infirmary which was also a great experience.
It was evident throughout the visit that Dr Ritchie and the other researchers I met are passionate about the research they carry out; the commitment put into providing an accurate diagnosis is admirable. The hours of work put into diagnosis and research demonstrate how deeply the team at the National CJD Surveillance units care about combating the disease and finding comfort for the affected families. Although the reason for my family being introduced to CJD is sad, I am thankful to Dr Ritchie for the amazing opportunity to visit the CJD unit and experience what they do there to combat this awful disease.