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.
Our next support group:
BOOKING FORM
VEDS Support Groups
A Safe and Supportive Space
Our regional support groups offer a safe, confidential and relaxed environment for anyone affected by vascular EDS. This includes parents, carers, partners, friends and children.
Led by People Who Understand
Each support group is facilitated by one of our dedicated volunteer regional coordinators. All of them have lived experience of vascular EDS, either personally or in a caring role, so they truly understand the challenges and emotions that can come with living with this diagnosis.
What You Can Expect
A welcoming place to:
- Share information and practical tips
- Listen to others’ experiences
- Explore ways of navigating life with vascular EDS
- Light refreshments provided
- Free to attend
How many vEDS members live in London?
49
8 - 64
