Fionnuala shares her outlook on being at risk of Huntington's disease, focusing on gratitude and making decisions.

Being at risk of Huntington's disease comes with many decisions that most young adults don't have to consider. Decisions such as whether to get tested, if you want to start a family, what options there are, and even decisions as to whether to tell friends or new partners. We spoke to Fionnuala about how she has navigated these thoughts, feelings and decisions.

To another young adult at risk of carrying the Huntington's gene, my advice would be: You are not alone. When you're ready, there's an entire support network waiting to help you navigate this complex journey. Take your time; nothing must be rushed.

Can you tell us a little about your background and relationship with Huntington’s disease?

"This year, I learned that my dad was diagnosed with Huntington's disease. Despite the initial shock, I am grateful that we now have the knowledge to support him through this diagnosis. However, the reality of Huntington’s disease is daunting. Our focus is on providing the best possible support for my dad while navigating the uncertainties that come with the disease. Personally, I see this as a journey into the unknown, and I'm approaching it one step and one decision at a time. I haven't undergone testing yet, as determining the right course of action is challenging. Observing the impact on my dad in the coming years will likely influence my decisions. For now, I am immersing myself in understanding the disease, ensuring that I am not left in the dark as we face this challenging journey together."

How do you feel as a young adult navigating decisions around your future?

"As a young adult, navigating decisions about my future in the context of Huntington's disease presents a lot of challenges. The question of whether to undergo testing now or wait for symptoms adds a layer of complexity to an already intricate situation. Beyond the immediate concern of the disease itself, I find myself contemplating the broader impact on various aspects of my life, such as my career, insurance, and the ability to secure a mortgage. The uncertainty extends to personal relationships, considering the potential complexities of dating in the future. Despite these uncertainties, I am currently focusing on the gratitude I feel for the strong support system around me. Knowing that my loved ones will be with me every step of the way instils confidence that, together, we can navigate and find solutions to the challenges that lie ahead. I feel confident that the people around me have my best interest at heart, so I don’t have to make these decisions alone!"

Where do you go for advice, support and information about being at risk and your options for the future?

"In my search for advice, support, and information about being at risk for Huntington's disease and exploring my future options, I have turned to various sources. Online research has been a valuable starting point, but the Huntington’s Disease Association has proven to be an invaluable resource. The charity not only provides comprehensive and expert-backed information but also extends a supportive hand through its dedicated support service. My family and I had the opportunity to speak with a member of their team, and the experience significantly eased our concerns by addressing all our questions. What stood out to me was the consideration the team gave to my specific situation, offering relevant links and resources, including insights into fertility—a holistic approach that has been immensely helpful in navigating the complexities of my potential future with Huntington's disease."

How does having Huntington’s disease in your family affect your relationships and planning for your future together?

"Having Huntington's disease in my family inevitably influences my relationships and future planning, but I'm fortunate to have a partner who has taken the time to comprehend the complexities of the disease. He has reassured me that, whenever I'm ready to explore this more, he will be there to support me through every step. Although discussions about having children are not immediate concerns for us, we've proactively explored options, acknowledging that our path might differ from that of other couples due to the hereditary nature of Huntington’s disease. The challenge lies in navigating long waiting lists, with a two-year wait for certain options, adding a layer of anticipation and pressure to our relationship. However, our commitment to open and honest communication allows us to confront these challenges together. Despite the uncertainties, I feel incredibly fortunate to have such a supportive partner who is willing to navigate this journey with me."

How has it made you feel about starting a family? Do you think there are enough options for those affected by Huntington’s disease and do you think there is enough information out there to support you and help you make an informed decision?

"The prospect of starting a family while grappling with Huntington's disease has brought about a mix of emotions, leaning towards nervousness. The array of options available for family planning is reassuring, yet the challenge lies in identifying the one that aligns with my values and circumstances. Currently, I'm considering the path of egg retrieval and pre-implantation genetic testing for embryos, as it seems like a fitting approach for me. However, I firmly believe that there's no singular right or wrong way to build a family in the context of Huntington’s disease. While there is information available, I think there could be more comprehensive resources, especially in the form of support groups that delve deeper into these considerations. Written information is beneficial, but having conversations with professionals who can make this information more accessible and tailored to individual situations would be invaluable in navigating this complex decision-making process."

What advice would you give to another young adult at risk or carrying the Huntington’s gene?

"To another young adult at risk of carrying the Huntington's gene, my advice would be: You are not alone. When you're ready, there's an entire support network waiting to help you navigate this complex journey. Take your time; nothing must be rushed. Make decisions when the time feels right, and ensure they align with your values and needs. The process is daunting, but discussing the disease openly is crucial in understanding it and, in turn, making it a little less intimidating. Seek out the support that suits you, whether it's through professional guidance, connecting with others facing similar situations, or engaging with resources that provide valuable insights into the challenges and choices associated with Huntington's disease."

If you are affected by Huntington’s disease and need support or advice, please contact us on 0151 3315444 or email info@hda.org.uk. Our dedicated phone line is open 9 am – 5 pm, Monday – Friday.