Local charity unveils 'first-of-its-kind' guide on rare disease
The Lily Foundation have produced a guide on Mitochondrial Disease designed to be patient friendly
A local charity has unveiled a new patient-friendly guide to Mitochondrial Disease, a rare disease which causes faulty mitochondria, which can lead to organ failure.
The Lily Foundation was founded in 2007 by Liz Curtis after losing her daughter Lily to the disease.
The creation of the guide was led by the head of patient services at the charity Katie Waller, who says there was a lack of patient friendly knowledge on the disease.
"All of the information that was available to patients and to family members was written as if it was for doctors and by doctors.
There was a real lack of information about mitochondrial disease that patients could actually understand."
Katie added that when it comes to rare diseases, there isn't the same level of support available
"When families get a diagnosis of a more common condition, they'll get a leaflet, they'll get a specialist nurse and they'll get that team around them straight away to provide them with that support.
There's been that's been missing for mitochondrial disease and our website has been really helpful for patients over the years, but we've never had something that people can physically hold in their hands."
Katie emphasised the importance of having something physical to read, rather than an online resource
"We've never had something that people can physically hold in their hands.
We've distributed over 450 physical copies to clinics up and down the country so that when a person gets a diagnosis of mitochondrial disease, once the shock of the diagnosis has sunk in, they can go back to that and they can refer to it.
They can give copies to friends and family and I think that's that's all really important as well."
As well as the physical resource, the guide is available online, and was downloaded 300 times within 3 days, which Katie says proves how much a resource like it was needed
The guide can be found online on at the Lily Foundation Website