Meet Zoë! The reality of living with Dercum’s Disease

Sep 24, 2025

Our Digital Resources Manager, Blayne and Senior Communications Officer, Niamh recently met with Zoë, who lives with Dercum’s Disease.

They interviewed her about her journey, her experiences with the condition, and what led her to want to share her story!

Can you introduce yourself to us, Zoë?

Hi, my name is Zoë, I’m from London and moved to Lincolnshire in 2019.

I have a rare disease called Dercum’s Disease. Dercum’s Disease is having multiple, very painful fatty tumours all over the body.

It is an extremely rare disease and it is thought that only twenty three people in the UK have it.

I suspect the actual figures are greater. I experience pain every day, some days are worse than others.

Can you briefly explain what Dercum’s Disease is and how it impacts you day-to-day?

It feels like my skin is being slashed with a blade. I also have severe itching and burning.

I do not sleep well and so spend a lot of time feeling very worn out.

I often struggle with mobility. It’s hard to pick things up, push doors, open drawers, carry things, walk, sit for long, stand for long etc.

At what aged were you diagnosed?

I was diagnosed at 50. I had been going backwards and forwards to the GP for ages, before finally having my first major flare up.

I ended up in A&E with a feeling that I had major sunburn and was being dragged across gravel.

Is Dercum’s Disease genetic?

Not to my knowledge. It is believed it may be an autoimmune condition, but not enough is known about it.

How did the initial interaction go with your GP?

I had been going backwards and forwards to the GP for ages, before finally having my first major flare up.

I ended up in A&E with a feeling that I had major sunburn and was being dragged across gravel. The consultant at the hospital told me to pay privately to see an oncologist ASAP as she was convinced I had cancer.

After lengthy Google searches, I told my GP that I thought I had Dercum’s Disease. She referred me to three separate clinics in turn.

I finally had two tumours removed and biopsies taken. I was diagnosed by the surgeon. This diagnosis was subsequently confirmed by a different consultant.

How does living with Dercum’s Disease impact your mental health?

Sometimes I feel quite anxious about where I will end up.

I find some medical appointments quite stressful and it’s exhausting attending so many.

I often feel overwhelmed and have a constant battle trying to figure out what I want to do/have to do/think I should be doing!

Does Dercum’s Disease impact your work, relationships, family and social life/travel?

I do not believe I could hold down a job due to the unpredictable nature of the disease.

I haven’t travelled very much at all since I became very ill. Being in a car for any length of time is very uncomfortable. I would struggle to carry a case.

Extremes of temperature have a negative impact on me. I am definitely more irritable and miserable so that is difficult in my relationship. I often have to cancel social arrangements or perhaps go to events that I would be better not going to. Then, I suffer the next day or so.