Why Support Matters
At SOFT UK we understand the importance of seeking support and why it matters to families. No matter what stage of your journey you are currently in, we are here for you.
People seek and use support in different ways, and that is why we have setup different places and methods for people to seek support from us, and also their peers. Everyone is an individual, and handle things in different ways.
Whether you want to talk to someone over the phone, via email, WhatsApp, or in a group setting, please do get in contact.
Why Support Matters: (Feedback from our community)
Seeking support during and beyond a diagnosis of Trisomy 13 or Trisomy 18 is crucial for several reasons, as it helps individuals navigate the complex and often overwhelming emotions that accompany their experience. Here are some key reasons members of our community have given for why seeking support matters:
1. Emotional Validation and Understanding
Sharing Feelings: Talking about the experience with others who understand can provide a sense of validation and reduce feelings of isolation.
Empathy and Compassion: Supportive individuals can offer empathy, compassion, and a listening ear, which can be comforting during a difficult time.
2. Practical Assistance
Daily Life Management: Friends, family, or support groups can offer practical help with everyday tasks, making it easier to cope with the impact and gravity of the situation. A diagnosis of Trisomy is incredibly complicated and can often be difficult to navigate, but by seeking practical advice from those who have experience, knowledge and guidance can be offered.
Resource Guidance: Support networks can guide individuals to professional resources.
3. Social Connection
Building New Connections: Support groups can help individuals connect with others who have experienced similar situations, fostering new, understanding friendships. Many amongst our community have forged friendships that have lasted years, forming close connections over their own unique journeys.
4. Providing Hope and Resilience
Hope for the Future: Seeing others who have navigated this complicated experience and found a way to move forward can provide hope.
Building Resilience: Support helps build resilience, enabling individuals to handle future challenges more effectively, equipping families with resources and knowledge of potential upcoming situations that they may not have known about before.
How We Can Support:
Support Volunteers:
We have a team of trained support volunteers who are available to speak with over the phone or via email. To get in contact, you can call our voicemail and leave a message, and we will get in touch, or email us.
Phone: support@soft.org.uk
Email: 0300 102 7638
Facebook Groups:
We have a number of closed Facebook groups available for our incredible community. In those groups you will find families with their own unique experiences who are more than happy to answer your questions or just talk. To find out more about these groups, click here: https://www.soft.org.uk/getting-support
Zoom Calls:
Each month we host group Zoom calls focused on different areas of our community. If you’d like to join any of these Zoom calls, please keep an eye out on our Facebook page for future dates. If you’d like to register your interest in upcoming calls, please email contact@soft.org.uk and we will get in contact when the calls you’d be most interested in are scheduled.
Family Stories and Podcasts:
We host a number of different family stories and podcasts on our website. If you would like to listen to these, you can find them here. Families have told us how therapeutic listening to other family experiences can be, and for some, how helpful it can be sharing their own story with the community. If you’d like to share your story with us, then please reach out to contact@soft.org.uk
Below are two podcasts which talk about the importance of seeking out support and talking with others:
In Conversation With Richard: A Siblings Journey
With The Benefits of Hindsight (Bereavement)