Living with Lynch Syndrome and Skin Cancer: Our Trustee’s Story
- 3 days ago
- 2 min read
Why dermatology awareness matters for people with Lynch syndrome
Today, we’re proud to stand beside one of our own. Our Lynch Syndrome UK trustee, Paul, has shared his personal experience of living with Lynch syndrome and facing repeated skin cancers — helping shine a light on an aspect of the condition that is too often overlooked.
In a recent video shared by the British Association of Dermatologists (BAD), Paul speaks openly about the realities of navigating a rare inherited cancer condition, including the uncertainty that can arise when awareness is limited.
A reminder: Lynch syndrome doesn’t look the same for everyone
Lynch syndrome is most commonly associated with bowel and endometrial cancers. But for some people, including Paul, the condition can also be linked to certain types of skin cancer.
Because this connection is less widely recognised, skin symptoms may not always trigger consideration of Lynch syndrome — potentially leading to delays in diagnosis, surveillance or appropriate care pathways.
Paul’s experience is a powerful reminder that:
Lynch syndrome can present in different ways
Dermatology awareness is an important part of the picture
Earlier recognition can help families access the right support sooner
The importance of informed, compassionate care
In the BAD video, Paul reflects on the challenges of living with a rare condition — particularly when healthcare professionals may have limited familiarity with it.
For many in the Lynch community, this will feel familiar. Navigating multiple specialties, explaining your condition repeatedly, and advocating for appropriate surveillance can be exhausting.
His message highlights two critical needs:
Joined-up clinical pathways between genetics, dermatology and oncology
Listening to patient voices to improve real-world care experiences
Encouragingly, the dermatology community is increasingly engaging with Lynch-associated skin cancers, helping to strengthen awareness and clinical understanding.
The power of community support
Paul also speaks about the reassurance that comes from connecting with others who understand life with a rare condition.
When clinical knowledge is still evolving, patient communities play a vital role — providing trusted information, shared experience, and emotional support.
At Lynch Syndrome UK, we see every day how powerful that connection can be.
Working together to improve recognition
We are deeply grateful to the British Association of Dermatologists for their leadership in raising awareness of Lynch-associated skin cancers and for amplifying patient voices like Paul’s.
Progress happens when communities come together — patients, clinicians, researchers and charities — to close the gaps in awareness and care.
By sharing his story, Paul is helping ensure that skin cancer in Lynch syndrome is no longer missed, misunderstood or dismissed.
We stand with him. We stand with every family affected. And we stand with the dermatology community working to protect and save lives.
Watch Paul’s video:
Find skin patient support groups (BAD Patient Hub):
