Participant stories

Thank you to everyone who has taken part in the 100,000 Genomes project through the WEGMC.

We are very grateful for your support and participation.

The following participants have kindly agreed to share their stories and talk about why they are taking part in this exciting project.

Adrian Shipp Рfrom Bedminster, Bristol

Adrian Shipp photo

“I’ve had a haemotological condition since birth and I think this important genomics research could provide some answers around it. I’m excited to be one of the first people to participate in the 100,000 Genomes Project at the WEGMC and I hope the research leads to improved diagnosis and treatments for people with rare conditions.”

Joy Ottery – from Horfield, Bristol

Joy Ottery WEGMC photo

“I have Brugada syndrom which is an uncommon and serious heart condition. I want to do my part to support and promote this important research and raise awareness of rare conditions. I hope that if my condition or that of my son Ben, who passed away suddenly at the age of 31 due to another rare heart condition (Long QT syndrome), was passed on to my granddaughter, she would receive an early diagnosis and be able to receive the appropriate treatment. Hopefully through this research, genomics could have the potential to diagnose people with rare conditions before the awful situation of a sudden death, which is such a traumatic experience for a family.”

Tracey Baker – from Chard, Somerset

 

tracey-baker-web-version

“When I was diagnosed with sarcoma in May, I mentioned an article that I had read around the role genetics might play in future cancer treatment to my consultant, but he said that it was something very much in the future so I put it out of my mind. Then I read about the 100,000 Genomes Project in Sarcoma UK magazine and thought, ‘I’ve got sarcoma, maybe I can get involved?’ My specialist nurse liaised with the WEGMC team to see if I could be part of the project even though it was in its infancy. On the day of my surgery, I found out that a sample could be taken for the project. I had a blood test afterwards and then answered questions about family history etc. I know that this might not make a difference to my treatment, but what they find out will be fed back to me and it will also mean they can tell me of any other diseases I am susceptible to. Hopefully it will help for the future for people with any cancer and also to help people better understand sarcoma.”