Welcome to the London VEDS Support Group. This group and our meetings are led by volunteer regional coordinator Bonnie.
Meet Bonnie Jackson
Hi, I am Bonnie a Mum on a Mission and proud to be regional coordinator for London!! My daughter Mia was diagnosed with vascular EDS in August 2021 after nearly 7 years of battling to find a diagnosis. My mission is to support Annabelle’s Challenge to find a cure for vascular EDS and to help families, parents and children affected.
In the three weeks waiting for Mia’s genetic results to confirm the diagnosis I reached out to Annabelle’s Challenge and found Jared and Christina. From that day on I couldn’t have wished for more support from the team and the community, especially during the difficult times.
I am also grateful of the support in times of hope when we all come together to celebrate and encourage each other’s efforts and immerse ourselves in a world of possibility; knowing that what we have set out to achieve is something bigger than oneself.
I am very passionate about raising awareness so that both the public and professionals know more about this condition. Whilst living in the unknown the self-doubt can be brutally difficult, knowing that something is wrong with your child but people not understanding the seriousness of the condition, nor being able to provide a diagnosis. It is that sense of isolation and void generated that Annabelle’s Challenge can fill as they understand and have experience in assisting during such challenging times.
Therefore, an important part of the mission is to prevent and protect families/children affected by vEDS from adversity and challenges they may face on their own journey so that they too can be more resilient. Mums on a mission are doing everything possible with this wonderful charity, community, our friends and families to keep moving forward together step by step on this journey.
VEDS Support Group
Our regional face-to-face support groups are safe, confidential, relaxed meetings with lunch included!
Facilitated by our wonderful volunteer regional coordinators, all of whom have lived experience with vascular EDS either personally or in a caring role.
They offer a welcoming environment for you to meet others who are touched by vascular EDS. They provide a helpful way to share information, listen to each other’s experiences and together find ways of navigating the complexities of living with or caring for someone with vascular EDS.
Our support groups can help you build self-confidence, become more informed and this may lead to you becoming more in control of your life with vascular EDS. They help you feel you are not so alone including your loved ones.
How many vEDS members live in London?
38
5 - 57
Our next support group:
Register Your Interest
This support group also have a private Facebook group where you can get peer support from other members living in your region, please click here to request to join the group.
Freephone helpline
0800 917 8495
