Delyth lives in North Wales and at the age of 50, she was diagnosed with a rare condition called Greig cephalopolysyndactyly syndrome, which now sits alongside her fibromyalgia and inflammatory arthritis. Although she was born with symptoms and extra digits, there were no investigations.
The condition has now been passed down to her daughter and her grandson. After many years of battling with the pain, her late diagnosis came when she decided to pay for a private consultation. “I had to fight to get a diagnosis, really fight. I was really struggling to go to work because I was in so much pain.” The condition causes lots of pain in her joints and is known to affect limbs, head and face. The symptoms are variable from person to person, but many are born with extra fingers or toes.
A big expense for her is footwear. Needing to wear specialist shoes is a must, to help manage the pain, her mobility and her wellbeing, but these do not come cheap. Prior to the pandemic, they made the journey to Derbyshire to get some specialist footwear. “I bought two pairs which cost nearly £3000.” These were fine for a little while but during the pandemic, Delyth needed an operation on her foot which meant the shoes were no longer suitable as her foot had changed.
She is tied into spending more for her shoes as shoes are a necessity. On top of this is the need for different footwear for different seasons.
Travel to and from appointments also strains the budget. Appointments are not usually local, and she needs to visit different hospitals from Liverpool to Oswestry. “Even the commute into the hospitals or appointments are things that are a big cost, the cost of fuel and parking can be so expensive. I also spend a lot of time on the phone, so that also adds to my cost. Things are going up and up and it's these extra bits I have to buy now.”
“I'm not sleeping at night. So, I get up and the electricity is on longer than it would be if you were asleep. I watched three countdowns before eight o'clock the other morning so the T.V. is on, the kettle was being used, it all adds into your extra usage, which will mean a higher bill.” Currently Delyth is looking around to see if there is any help to cut her costs, especially with her utility bills. They do qualify for Council Tax Benefit which she receives but there is more help needed for them. They struggle with finding where to turn to for help and advice and being unsure about what exactly they are entitled too. Her first port of call is an internet search to see who she can turn to.
At the moment they socialise with the local church, and they also have access to a local theatre, which sadly at the moment has closed for refurbishment. They are careful and restrict doing things or going to places or for days out due to the extra costs and strain it would put on their budget. “I do have a companion ticket for the local theatre which means someone can accompany me for free, so I pay for my ticket, or we go halves on the ticket. I belong to a local church, and they're very good. We're like a big family so we socialise there, but we don't really go out because of the cost of things. I think twice about it, whereas in the past I would just go.”
Like many parents, Deylth’s concerns and worry for her own child outweigh her own worries about finances. The cost-of-living crisis is putting a strain on her daughter who is a single parent to her son with the same rare condition. “My main worry is my daughter and my grandson, and how it's going to affect them really. My daughter doesn't have any help at all.”
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Greig Cephalopolysyndactyly
Greig cephalopolysyndactyly syndrome (GCPS) is a rare genetic disorder characterised by physical abnormalities affecting the fingers and toes (digits) and the head and facial (craniofacial) area. Characteristic digital features may include extra (supernumerary) fingers and/or toes (polydactyly), webbing and/or fusion of the fingers and/or toes (cutaneous or osseous syndactyly), and/or additional abnormalities.
To learn more about Greig cephalopolysyndactyly syndrome, click here.
Source: https://rarediseases.org