About LymphAware ID

Helping people living with lymphoedema be better understood.

LymphAware ID is a patient-led service created to make it easier for people living with lymphoedema to communicate important information when they need support, assistance or understanding.

How LymphAware ID began

LymphAware ID was created by Graham Rooms and is operated by him as a sole trader. Graham developed secondary lymphoedema following prostate cancer surgery in 2019. Before his diagnosis, like many people, he knew very little about the condition or the profound effect it could have on everyday life.

Living with lymphoedema has given Graham first-hand experience of how difficult and time-consuming it can be to manage. The swelling, discomfort and pressure can affect mobility, clothing, sleep and daily routines, while the need for compression garments, treatment and careful skin care is constant. It can also affect confidence, independence and mental wellbeing. Complications such as cellulitis can become serious and require urgent medical treatment.

As Graham began talking to others and raising awareness, he repeatedly encountered how poorly understood lymphoedema can be. People may have to explain their condition again and again, sometimes when they are unwell, anxious, in pain or simply unable to communicate easily. Visible swelling or changes in body shape may also be wrongly assumed to be weight gain or obesity, rather than recognised as the effect of an underlying medical condition.

Through early market research, Graham found that many people living with lymphoedema would be comfortable wearing a bespoke awareness ID card. He also recognised that a card alone could only say so much. By linking it through a QR code to a digital profile, the wearer could choose what information to share, giving others a quick and respectful way to understand the condition, its impact and any support that may be needed.

This simple idea became LymphAware ID: a physical identification card combined with a patient-controlled digital profile. It is intended to support communication, not replace medical records, professional assessment or medical advice.

Graham hopes LymphAware ID will help its members feel more confident, better understood and less burdened by having to start every explanation from the beginning. Above all, it was created to help close the awareness gap around lymphoedema with greater understanding, dignity and compassion.

Graham Rooms Founder of LymphAware ID

Created from lived experience

LymphAware ID has not been created from theory alone. It is shaped by Graham’s daily experience of living with and managing lymphoedema, and by listening to others affected by the condition.

For Graham, lymphoedema has, perhaps surprisingly, become a greater daily concern and worry than his cancer. That may sound difficult to understand, but he finds living with lymphoedema the greater challenge—both physically and, often, mentally. Through speaking with others, he knows he is far from alone in feeling this way.

That experience is another of the many reasons he created LymphAware ID: to raise awareness and give people a simple way to say, “This is my condition, this is how it affects me, and this is what I would like you to understand.”

What matters to LymphAware ID

The service is built around a small number of principles that will remain central as LymphAware ID grows.

Patient-centred

The person living with lymphoedema should remain at the centre of the service and in control of the information they share.

Simple to use

LymphAware ID should be understandable and practical for people who may not feel confident using technology.

Privacy-conscious

Information should be collected and displayed only where it serves a genuine purpose.

Accessible

The website, patient portal and QR-linked profile should be designed to work clearly across phones, tablets and computers.

Credible

LymphAware ID should be suitable for appropriate scrutiny by healthcare professionals and relevant organisations.

Practical

Features should be added because they provide genuine patient benefit, not simply because they are technically possible.

Helping People Living with Lymphoedema Be Understood.

LymphAware ID brings together a physical identification card and a patient-controlled digital profile. The current invitation-only trial is an opportunity to test the complete service with people living with lymphoedema, learn from their experience and make any final improvements before wider launch.