“I want to leave a positive legacy”: 29-year-old remains hopeful after testing for a rare genetic type of Dementia
Six years ago, Jordan made the decision to get tested by the Genetics Team at Birmingham Women’s Hospital for Familiar Frontotemporal Dementia (FTD), a rare type of dementia caused by a faulty gene, after sadly losing his mum to the condition when he was just 15 years old.
The 29-year-old from Redditch tested positive for the FTD gene, but along with his younger brother who also tested positive, he’s determined to raise awareness for the condition and remain positive.
Since his diagnosis, Jordan has been seen regularly by the Genetic Counselling team at Birmingham Women’s Hospital to navigate life since the positive test result.
After they lost their Mum, Jordan and his two siblings Kennedy and Cian discovered the genetic element to the condition.
He recalled: “At the time when Mum was ill, we didn’t fully understand the extent of it.
“After we lost her, my sister Kennedy got in touch with relatives on her side of the family from Ireland, and we found out that 13 other relatives had sadly died from the same condition.
“It was a huge shock. After losing a parent so young and caring for her throughout the illness, to then find out we might go through the same thing was really difficult.
“It’s a feeling that words can’t really describe.”
Familiar FTD is caused by a faulty gene, and any child with a parent who had the condition has a 50% chance of inheriting the condition.
The genetic condition is a rare type of dementia and is a progressive brain disease which causes parts of your brain to deteriorate and stop working over time and affects the parts of your brain that control personality and behavior or language and speech.
Currently, there is no cure or treatment for the condition.
Jordan decided to get tested after his older sister Kennedy was told she didn’t carry the gene, and sought an appointment with Laura Boyes, Lead Consultant Genetic Counsellor, who had also seen his sister.
He said: “After hearing about Kennedy, it was like something switched in my brain and I wanted to find out.
“I got in touch with Laura and I was seen regularly by the Genetics team, where we went through a long process to make sure I was in the right frame of mind to do this.
“The results had the potential to change my entire life, so they had to make sure I was as ready for it as I could be, and I had many different appointments over the course of a month or so.
“We spoke a lot about the genetic element to the condition, the potential impact on having children, and why I wanted to find out and how I’d feel about any set of results.
“After that, I had a blood test and had an appointment set with Laura to find out the results.”
Unlike his sister, Jordan discovered he was a carrier for FTD, and at some point in his life he would get the condition.
He added: “As soon as I saw Lauras face, I just knew.
“There were a lot of tears, and telling my sister and Dad was hard, but Laura was supportive and answered all my questions and gave me as much time as I needed.
“The fact that I have this gene means at some point in my life I’m going to get this illness, and the symptoms could start showing in as little as 10 years.
“There’s no treatment or cure, so it’s like a terminal diagnosis.
“As difficult as it was finding out, I don’t regret the decision to find out. Looking back, it ultimately drew a line on that part of my life and allowed me to move forward to be who I am today.”
A few years after his diagnosis, Jordans younger brother Cian also made the decision to get tested, and unfortunately, he also tested positive for the condition.
Jordan said: “I’d come to terms with my results and had learnt to accept it, but when Cian got the results, it really hit home.
“It gave me a whole different perspective watching him go through it, and it felt unjust that he had to go through this too.
“After he got the news, he said he wanted to get involved in a lot of the advocacy I was doing, and that made me really proud of him and how he was able to try to see some light in all the darkness.”
Since his positive test result, Jordan has been seen regularly by Laura to help him navigate through life and offer any advice.
He added: “The whole experience has been made so much more bearable by the support of Laura and the Genetics team.
“Laura is always there to help support us and almost makes sure there’s another appointment scheduled in so we never feel alone, and she’s been such a rock for me, my family and my brother.
“One of the first things I said to Laura after hearing the news was ‘what can I do to make a difference’, and she’s been so supportive in putting me forward for research trials and studies, and she’s supported me through therapy too.”
Despite the uncertain future, Jordan is determined to remain positive about life, and along with his brother, have dedicated their lives to helping to raise awareness of the rare condition and make the most of life.
He added: “If I could take this gene away from me and my brother I would, but I can’t and we have no control over what's going to happen, so we must make the most out of what we have.
“I’ve given talks in schools to help children understand more about genetic conditions and rare illnesses and what can cause them, and me and Cian will talk about it as much as we can.
“I’ve been given a pretty rough stack of cards in life, but it’s now up to me to make the most with the hand I’ve been dealt.
“I want to show that you can still have a positive impact on the world even in such a short amount of time and leave a lasting legacy for our friends and families to look back on with pride.”
Laura said: "It has been a pleasure and an absolute privilege to work with and support Jordan, Cian, Kennedy and their families. Since I first them 10 years or so ago, I have been touched by the way have approached life.
"The way Jordan and Cian have adjusted to and dealt with their results has been immensely impressive and quite inspirational. They have been open about the impact and emotion that naturally comes with this life changing knowledge and yet this has allowed them to come through the inevitable sadness to a place where they can feel positive about the future. They are determined to make the most of the time they have, to advocate and fundraise for dementia research, having run such impressive challenges to raise huge sums.
"There is no right or wrong way to deal with the result of a presymptomatic genetic test, and for many people the impact and the way they cope changes over time. In genetic counselling we are lucky to see glimpses of people's lives over the years, share in their stories and to be able to help in small ways here and there."