New gene gel could one day change lives of those living with ‘butterfly skin’

22 Oct 2018

A gel-like substance (not pictured) can be applied to the skin of someone with EB. Image: © tongpatong/

Researchers have developed a new gel that could one day drastically improve the quality of life of those living with the rare skin disease known as EB.

Attendees of the last few Inspirefest events will have heard of the inspiring stories of those living with epidermolysis bullosa (EB). This is a rare skin disease caused by a fault in the gene that makes a vital protein responsible for keeping our layers of skin together.

Affecting approximately 300 people in Ireland, the condition seriously reduces a person’s quality of life, with painful blisters developing – both internally and externally – from the slightest bump.

Now, however, a team of researchers from University College Dublin (UCD) has developed a gel-like treatment that could drastically improve the lives of those with EB as it helps to form functioning skin.

Great improvement

The gel works by inserting a functioning gene into skin cells and, so far, has been theoretically proven to work with one strand of the disease. This gives great hope for the team to carry out further studies to see if it will work on other forms of EB as well.

Another major positive about this treatment is that it does not involve skin grafting procedures, which can be very painful. The gene therapy research has been in the works for the past nine years with Prof Wenxin Wang between NUI Galway and UCD, with funding from EB charity Debra Ireland through public donations.

‘This is not a cure’

“This is not a cure, but this gel could make skin stronger and could improve life expectancy as a result,” said Debra Ireland’s head of research, Dr Sinead Hickey. “It may also prevent wounds in the first place. If there are no wounds, then patients will suffer fewer infections, feel less pain, less itch and develop less skin cancer.”

Hickey also confirmed that a pharmaceutical company has taken over development of the gel, but has encouraged more people to continue donating to the charity to further more research. “There are research projects similar to Prof Wang’s out there, waiting to be funded, which could bring us a step closer to a cure,” she said.

“If charities like Debra Ireland aren’t investing in the early-stage research, we are never going to find the EB champion who can change the lives of this and future generations.”

This week also marks EB Week, created to raise awareness of the disease among the general public.

Colm Gorey was a senior journalist with Silicon Republic