Lipoedema communities: How to find support

Living with lipoedema is not easy and can be isolating due to society misunderstanding, but let me tell you my dear friend, you are not alone! There are networks of support communities and resources, outside, to empower you as patient, offer guidance, and promote connection with health care providers, peers and also, help caregivers to get support and advice, too. So, in this blog, I show you how to find the help and understanding you deserve.

Why should I find support?

Because lipoedema affects both physical and mental health. Symptoms like pain, swelling and mobility issues (advance stages) might highly affect your quality of life. Besides, many patients experience emotional challenges, such as low self-esteem, anxiety, depression and frustration due to misdiagnosis, lack of understanding or being judged by family, friends and society. For that reason, connecting with others who walk on the same path, allows you to share experiences and get advice, assistance, validation, have hope and make new friends.

How can I get in touch with other lipoedema patients?

There are online communities and support groups

Social Media Groups

Instagram
Youtube
Facebook
Ticktock

First,search for Lipoedema (remember it can also appear as lipedema for American English speakers) to find active groups. There patients share stories, advice, and have the opportunity to encourage each other.

Once you find an account (fundations, advocacies, influencers) you feel comfortable with, follow them for the updates news and community stories.

Specialised online-platforms that give physical and emotional support

Here, I mention 3 of the most known in UK, but also, in references you can find more society and specialised platforms ( just click below):

Lipedema Support Community. It offers a safe space to connect, share experiences, and access educational webinars, etc.
Lipedema Team Community. Provides monthly sessions on nutrition, mental health, and treatment options, plus access to specialists and peer support.
Talk Lipoedema. This charity is located in the UK and gives support to patients, families, and caregivers with information, newsletters, and real-life stories.
Fat Disorders Resource Society (FDRS). Hosts annual conferences and maintains a supportive online presence for those affected by fat disorders, including lipoedema.

Where can I seek information about lipoedema?

The are informational guides or online libraries

Lipedema Foundation. It has a comprehensive resource library, downloadable guides, and a patient self-advocacy toolkit to help navigate the healthcare system.
Lipoedema UK. Here, you can find medical resources, research archives, and best-practice guidelines. It offers material for clinicians and lipoedema therapists, too.
LEGATO Library. An up-to-date archive of research publications, making scientific data more accessible to patients.

How can I find professional help?

Provider Directories. The Lipedema Foundation and affiliated organizations maintain directories to help patients find knowledgeable clinicians and therapists.
NHS. It gives you information about the condition and related professionals.
National Lymphedema Network Offers listings of certified therapists specialized in lymphatic and fat disorders.

What about learning more and advocating yourself

Here are some options for you, but there are a lot more online.

Webinars, talks and masterclasses. Many communities around the world offer regular online events covering self-management, treatment options, and coping strategies. They are available in different languages.
E-Learning Courses. Lipoedema UK and the Royal College of General Practitioners provide online courses for patients and healthcare professionals.
Peer Stories. Books or talks about others’ journeys can be deeply reassuring. You can find them in different foundation websites. There you can also look for testimonies, photo galleries, forums and interviews that highlight the diverse experiences of those living with lipoedema.

A final word…

Finding the right support system is pivotal for managing lipoedema (clinicians, lipoedema therapist, psychologist and family, friends and peers). Support groups, specialised webpages and lipoedema communities help you:

get new knowledge about the condition
feel supported which gives you strength
have a sense of belonging
be updated in latest news and treatments
self advocacy

Remember you are not alone on this journey, feel free to contact us whenever you need, we are always glad to help!

We hope this information is useful for you. If you need advice or have any questions about our treatments, please contact us. You can find us in Mill Hill Broadway and Islington. We are always happy to help. If you like this blog, please share!