Fife family in fight to find cure for rare skin condition

Hannah Lark, 26, has Epidermolytic Ichthyosis (EI), a disease found at birth which causes her skin to be tight and sore around her joints.

It also means she has to take care with movement – even the smallest fall can lead to an open wound and severe infection.

Since she was eight years old, Hannah has taken Acitretin, a retinoid medication which helps her skin to appear more "normal".

Hannah Lark, 26, has lived her whole life with painful and fragile skin due to her condition. (Image: Family photo)

However, a recent study by the EI Cure Project is said to have discovered a potentially permanent treatment for EI, but it is estimated to cost around £300,000 to fund.

Hannah explained: "Anybody with my condition has a 50 per cent chance of passing it onto their child – which can bring a lot of heartache when thinking of starting a family – but with me it was totally spontaneous as nobody in my family had it or had even heard of it before.

"To me finding a cure would mean the world, I’m fortunate to have a very happy life with a wonderful family, friends and partner, who I own our perfect home with, I own a successful business which I love, and get to do lots of the things I love to, such as travelling.

"But my life is very limited by this debilitating condition, I grew up having to accept that there’s a lot of things I’ll never be able to do – and now the prospect of one day being able to do those things is mind-blowing."

Hannah's brother, Jordan Lark, 37, will be taking the family's first step to helping to fund the much-needed work to develop a cure by taking part in the Knockhill MacTuff event on May 7.

The 15 kilometre race takes place through challenging terrain such as mud, water, and obstacles, and is built to test participants' physical and mental strength.

Hannah said: "I couldn’t wish for a better big brother than Jordan, he has been there for me throughout every single struggle I’ve been through in life and continues to be, he’s constantly checking in on me to see how I am, we have such a close bond and I think he just wants to do anything he can to help with finding a cure for me, and all the other people like me with EI.

The logo for the EI Cure Project which Hannah created. (Image: Contributed)

"I wanted to help with the charity too but of course I'm not able to do anything physical, so instead I offered my design skills to help with creating the charity logo, and I plan to help with a lot more of the creative side of things!

"I was asked to do a logo featuring the symbol for DNA, and the one red line is the faulty gene that causes the condition.

"The silhouette of the child is therefore also red, and based on a very special little one with EI."

Hannah's condition means she struggled to find a job which suited her – an internship at Harvey Nichols in Edinburgh left her skin a "complete mess" due to a lack of time for her gruelling skin care routine, while her feet were in "absolute agony" and badly blistered due to the commute,.

That led her to launch her own business, Hannah Lark Design, from her Dunfermline home using the skills she developed while attending a Graphic Design Course for two-and-a-half days a week in Edinburgh.

While she says her current medication has been a "miracle" in aiding her condition, it is Hannah's family who have helped her through some of her lowest points.

She says that Jordan, as well as her mum Sally, dad Robert, sister Brogan, and partner Shaunne have "lived lived through all of my struggles".

Hannah added: "They’re my biggest supporters and are with me through everything, even now as an adult.

"They made my childhood an incredibly happy one – we have endless happy memories and still continue to make them together regularly – now with brother's kids too, who I'm extremely close to.

"I also find a lot of support in the Facebook group I’m in for people like myself with EI.

"I’ve met so many lovely friends through it from all over the world and it feels pretty special to know I’m not alone in my condition.

"We also have a lot of new parents joining who have just had a baby with EI and are feeling lost and scared, so it’s lovely that myself and other group members are able to give them comfort, answer any questions and reassure them that their baby is going to be okay and can have a bright future."

You can support Jordan in his challenge to raise money for a cure at his GoFundMe page.

Anyone interested can also visit the EI Cure website to find out more.