Further Connections: Lymphoedema United Meet-Up 2
- rachaelboggiano
- May 6
- 2 min read
Updated: May 20
Further Connections: Lymphoedema United Meet-Up 2
Similar to the Lymphoedema United meet-up I previously attended, this recent gathering provided a safe, welcoming space to share our personal experiences, challenges and self-care strategies. Held at Accelerate CIC in Hackney, North London, the event brought together a community of people living with lymphoedema, all eager to connect and learn from one another.
We were joined by three nurses from the Accelerate lymphoedema clinic, including Caitriona O’Neill and Rebecca Elwell, who generously offered their time to answer questions about compression, symptom management and emerging developments in lymphoedema care. Following this, a foot and wound specialist gave a highly informative talk covering topics such as wound prevention, foot care essentials and recommendations for appropriate footwear.
One particularly impactful moment for me was my conversation with Rebecca Elwell regarding genetic testing for primary lymphoedema. It is a concept I have never encountered before. This testing involves analysing blood and, in some cases, skin samples to identify genetic variants known to be linked to primary lymphoedema. The results can potentially offer more clarity on the underlying cause of the condition and provide guidance on treatment strategies tailored to individual genetic profiles. Rebecca explained that two NHS clinics in the UK currently offer this service: St George's Hospital in London and Royal Derby Hospital. Since learning about this, I’ve contacted my lymphoedema nurse at Clatterbridge to inquire about getting a referral. I’m passionate about exploring any and all approaches that might offer a deeper understanding of my condition.
This meet-up was sponsored by Jobst and, like the last, left me feeling inspired, better informed and even more committed to staying proactive in my care. Opportunities like this remind me how vital it is to stay connected to the lymphoedema community and how powerful shared knowledge can be in navigating this lifelong journey.
