Chesterfield-based Adrienne & Leeann Lakin both have fibromyalgia, as do their other sisters and their mum. Both started with symptoms in their late teens, but, as so often happens, it took much longer to be diagnosed.
Under the UK Equality Act, fibromyalgia is deemed as an impairment rather than a disability. So, in an attempt to secure more support, understanding and awareness along with better funding for research and care, they started a petition to UK Parliament.
I recently had the opportunity to talk to the sisters about the petition and to find out a little more about their motivations, their aims and how we can pitch in and help out with the petition.
The sisters agree that the petition is important for not just campaigning to get fibromyalgia recognised as a disability, but also for highlighting and raising awareness; bringing it into people’s homes through interviews, television and radio appearances and generally raising the profile and understanding of the condition, along with other invisible chronic conditions such as ME and CFS. No matter what the outcome of the petition, their hope is that, at the very least, more people will have heard of and have some knowledge about fibromyalgia leading to less stigma, more understanding, more support and better treatment options.
To this end, the sisters are currently organising an event which they also hope will help to raise awareness and also funds for the Fibro Flare Awareness Group charity for which they recently became trustees. The event is being held on the 13th May 2017 at St Michael All Angels, Brimington. As 12th May is fibromyalgia awareness day, the church is also going to be lit up purple over the weekend to further help bring awareness to the condition.
The sisters have received incredible support and assistance already with the petition and the event, and the positive support and encouragement far outways anything negative they have been subjected to.
In particular, they have been supported by the Fibro Flare Awareness Group, Dr Kim Lawson of Sheffield Hallam University, Chris at Spire Radio, the team at Peak Radio, BBC Radio Sheffield, Faye Dempsey, Rock Off Fibro Charity Concert and The Derbyshire Times. They have received loads of donations and support from local businesses and Gulliver’s Kingdom plus all their family and friends have been fantastic – even arranging and taking part in a charity skydive.
If you can help in any way to support the event on 13th May; such as hosting a stall, making a donation, creating crafts to sell or by sharing and promoting the event get in touch with Adrienne & Leeann through the following social media channels:
The sisters have been featured on a number of radio shows, blogs and news websites and were recently featured on Calendar News for ITV. You can watch the full report here.
You can share the petition and sign it here.
Many thanks to Adrienne & Leeann for taking the time to talk to A Sheffield Fibromite. I wish you all the success for your upcoming event and with the petition. It’s high time Fibromyalgia was given more prominence in the media and within the UK healthcare system.