Susan inspires espresso delivery of help for support group in Swansea

A coffee shop manager whose wife suffers from an extremely rare disorder has launched a fund-raising campaign to help victims of the debilitating condition.

Dan James, who runs Costa Coffee in the WH Smith store at the Quadrant shopping centre, in Swansea, is enlisting the help of customers.

His wife, Susan, 27, is one of just 600 people in the UK with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), in which the victims’ nerves attack themselves.

As part of Dan’s fund-raising efforts, Costa customers can drop off used stamps while waiting for their cappuccino or latte.

The stamps will then be sent to the CIDP support group to sell to collectors.

In CIDP the sufferer’s immune system attacks the outer insulating nerve layer, leading to weakness and altered sensations, which come on slowly, often over a few months. The weakness can be so severe as to confine patients to bed.

The condition left Sarah having to use a wheelchair because she couldn’t walk more than a short distance, unable to raise her arms or lift anything.

Now she’s just completed a trial of a new way to keep the condition at bay, and that may mean the end of lengthy hospital stays every few weeks.

Mum-of-one Sarah said: “Saving stamps is such an easy thing to do, so I was delighted when Costa agreed Dan could put a collecting box on the counter in the Quadrant Centre.

“The group sells them on to stamp collectors and it all helps with the funds. This Costa is next door to the Post Office as well, so we’re hoping people will have lots of unusual stamps they can give us.”

The Ancient and Medieval History Swansea university  graduate was diagnosed in June 2010, after she went to see a doctor because she had fallen downstairs three times in one week.

“Because the outside of my nerves had been eaten away, the messages from my brain were not being sent properly. My brain couldn’t tell my foot where it needed to be so I fell. I wasn’t hurt, just bruised, but I found it hard to get up again. My feet felt numb, a bit like when your foot goes dead because you’ve sat on it.

“Falling is par for the course with CIDP. You become more clumsy and unfortunately fall on a regular basis.

“Luckily I’ve now got so used to falling that I rarely hurt myself. You also become used to dropping things as your hands spontaneously open or don’t grip properly.

“Also, I realised I was taking longer and longer to walk to work. I was 24 and pretty fit – although I’m only 5ft 1in tall I’ve always been strong.

“I could lift my husband up, or move wardrobes. But suddenly I felt weak all the time, and not able to do anything, and had to hold on to the bannister to walk upstairs.

“I was like a 70-year-old. If I’d challenged my grandma to a race, she’d win! It seemed like I was walking through concrete, and couldn’t get my legs to move properly.”

The medic – her old university doctor – initially suspected Guillan-Barré syndrome (GBS), an acute form of CIDP, and referred her to a specialist at Morriston Hospital.

“A lot of doctors haven’t heard of the condition, but I was lucky in that my GP had,” said Sarah.

“At Morriston I had tests and an electromyogram, where they put electricity through the nerves to see if they are working properly. Then I had a lumbar puncture and it was confirmed that I had CIDP.”

She went on to a course of intravenous immunoglobulin (IVIG) – where antibodies from donor blood are injected into her – and soon rallied during her nine-day stay

“The doctor wouldn’t let me out of Morriston until I could get up from a squat. I hadn’t realised it, but before it was diagnosed, I was walking like a duck, waddling along because of my hips: the brain was sending the wrong messages so the hips moved too much, and my legs were trying to compensate,” explained Sarah.

“The number of people diagnosed with CIDP is 1 in 100,000 worldwide. There’s between 600 and 700 of us in the UK. The support group also helps those with GBS, which affects about 1,500 people a year in the UK.

“That condition comes on over a matter of days and can quickly lead to paralysis for months or even death.

“CIDP comes on more slowly and although you may die with it, you won’t die of it. However, once you’ve had GBS you are unlikely to relapse. The course of CIDP is generally relapsing/remitting and it’s not something that many people really recover from completely.”

Then weeks after she was diagnosed, she discovered she was pregnant, and she and fiancé Dan moved their wedding forward, and married in Swansea in October 2010.

“The pregnancy wasn’t planned – we hadn’t even had answers from the specialists about what CIDP meant for our chances of being parents, when I discovered I was expecting. For some people with CIDP makes the condition worse. I’m not sure what difference it made to me, because I was only just getting used to the condition.

“I had to go into hospital every few weeks for more IVIG treatment, and was meant to have one just before the baby was due. But he decided to come early and so I wasn’t able to have the last dose, which made me very bad after the birth.”

Michael was born by Caesarean section in February 2011, weighing 5lb 9oz – although he was healthy and could go home, Sarah was too ill to even lift him and the pair had to stay in hospital.

“It wasn’t great with the Caesarean – CIDP means you take a lot longer than average to get over anything that relaxes your muscles, so it took me a long time to get over the anaesthetic they used in the operation,” said Sarah.

“While I was well through the pregnancy, I was checked constantly by doctors because of my CIDP and had twice as many scans as in a normal pregnancy.

“One of the massive problems I had after the birth was that, because of the C-Section I obviously couldn’t use my stomach muscles until they healed.

“I hadn’t realised until then how much I used those to compensate for my inability to move in certain ways.”

Ian Kirkpatrick, Manager of the Quadrant Shopping Centre, said: “Just because a condition is little known doesn’t mean it can’t have awful effects on people’s lives and especially because it is so rare it is harder to find support.

“That makes what Dan and Sarah are doing to help even more important and hopefully it will be a way for people to make good use of their old stamps – so many people come to the Quadrant it is the ideal place for something like this.”

The couple, who met when they both worked at Swansea’s Vue Cinema, moved into a house in Llanelli, which they adapted so she didn’t have to use the stairs with new-born Michael.

“Also, there are no hills, so I can walk easily to the shops. I was fit and healthy before – I didn’t go to the gym or play sports but I walked everywhere. It’s difficult not being able to do that now, especially having to push a pram as well,” added Sarah.

She previously had to go to hospital every eight weeks for IVIG treatment, but last November was asked to take part in a steroids trial by her neurologist at Morriston Hospital.

“It involves high doses of steroids for four days out of every 28, for six months. The aim is to kick-start your immune system into working properly. I’ve just finished it and it’s hard to say yet whether I feel better or worse – it could be months before I start to feel ill again., or just a matter of weeks.

“It has made a difference, though – with IVIG you need to be on a downhill slope before they dose you. When I was on that I’d have to struggle looking after a child I could barely lift, while unable to walk properly, until they could get me in for treatment.

“I couldn’t lift Michael when he was born as he was too heavy for me.  Also it makes you tired – all the treatments have pretty nasty side effects too.

“The support group has been invaluable. When you are diagnosed with GBS or CIDP it is hard to take all the information in, as you are in shock. The support group is there to provide the information as and when you need it.

“They also offer practical support – it is useful to talk to somebody else with the condition to see how they are coping.

“They can provide grants for home improvements for sufferers and even give money to relations to help them to fund hospital visits for people (usually GBS sufferers) who are confined to hospital for long periods.  They also arrange conventions with neurologists so they can share information about the condition.

“The condition is usually thought to affect older men, but through the group I have discovered that there are younger people with it, and we stay in touch through our Facebook page. It’s not genetic, but it is linked to conditions that affect the immune system.”

More details about the support group at

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