Tony lives with a rare condition called alkaptonuria, also known as Black Bone Disease. It affects the joints, bone, cartilage and tissue. The condition is very painful and causes severe pain for him. “A lot of people who have a condition have replacement joints at an early age. I've been lucky that I haven't, but I haven't got a normal disc in my spine. My lower spine is basically crumbling, I need spinal surgery on it. I get lots of nerve problems, so it's a multisystemic condition.”
Due to his rare condition and the medication he is on to help ease the symptoms, Tony has to eat a special diet to control the amount of protein that he consumes. “When I am dishing out food, I have got to be very careful about the size of my portion of protein. Of course, I've got to eat a certain amount of protein. So, I have got to make sure that I’m eating right. Breakfast, lunch and evening meals are really my main ones, but I have got to have snacks in between. I've certainly noticed when I’m buying, that things are far more expensive. I also like to eat a lot of fruit and vegetables and that's all got gone up as well. It has impacted my budget.”
“It has made me think about where I shop and how often I shop and has changed my shopping habits. I now tend to do one big shop from a cheaper supermarket, then I might go into a local shop or larger supermarket for something specific. If I see something that is on offer that I use, then I will buy it even if I don't need it at that time, so I know that I've got it at a cheaper price.”
The increase in not only food but also energy bills and car use has impacted him. At the moment Tony is making ends meet by using savings to top up his pension and admits to being fortunate to have that small safety net, but he knows not everyone is lucky. “There are some people I know with this condition, and they rely on benefits and are struggling. It's just absolutely heartbreaking.”
Recently Tony noticed his car insurance cost had risen compared to the same last year. “I put my daughter on the insurance this week as an extra driver only because she wanted to use my car because it's a larger car, which I did last year, but the difference is huge. I had to pay £20 for her to go on. Whereas when I did it last year, it worked out far, far less. My daughter is an experienced driver in her 40’s.”
Its costs like this, on top of the already rising cost of essentials, that are affecting him.
“Over the past 12 months, it's mainly the fuel and cost of foods that have impacted me. Those are the two things really. If the energy costs hadn't gone up, then with the money I get I could have most probably managed the food increase costs, but because the energy costs have gone up so high, at the same time as the food costs, I think that's made more of an impact on my budget.”
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Alkaptonuria
Alkaptonuria is a rare genetic metabolic disorder characterized by the accumulation of homogentisic acid in the body. Affected individuals lack enough functional levels of an enzyme required to breakdown homogentisic acid. Affected individuals may have dark urine or urine that turns black when exposed to air.
To learn more about alkaptonuria, click here.
Source: https://rarediseases.org