TWO-YEAR-old Gracie Hughes suffers from Raynaud’s syndrome. Here Mum Laurie describes her worrying condition.
Gracie doesn’t get the typical symptoms of Raynaud’s, when fingers or toes turn white due to the cold or emotional stress, hers go blue immediately. For Gracie, it starts in her hands before travelling up her arms and affecting her feet, legs and face.
The worst occasion was when her hands turned black and looked like they were about to drop off. I’d walked to my mother’s house, just two streets away, and five minutes after arriving noticed Gracie’s hands changing colour. Within 10 minutes, they were swollen and black – I really thought she was going to lose them.
Worried sick, I rang my health visitor. She came immediately and was very concerned so we rushed Gracie to hospital. Later, she admitted she thought something was wrong with her heart.
It took until Gracie was 14 months before she was diagnosed with Raynaud’s, although I first noticed something wrong when she was about three months old.
At the time, I didn’t say anything to my health visitor, thinking all I needed to do was wrap her up more or put on a few extra blankets.
Back then, I was living in the Rhondda Valley and, later, decided to take her to my local surgery to find out why her hands kept turning blue.
It was the first of many visits to the doctor’s or local hospital. I’ve also lost count of the times I was told to go home, I was wasting their time. But I knew something was wrong.
It seemed like no one, including doctors, had a clue about Raynaud’s and couldn’t spot the signs. It was a relief when, after so long, I finally discovered what was wrong – although that was by chance. Luckily, a rheumatologist happened to be on duty on one of my hospital visits.
He knew what the problem was immediately.
Various things can trigger an attack. It can be anything from walking into a supermarket with air conditioning and passing the freezer aisle to holding a cold item. Sadly, I can’t let Gracie have a lolly or ice cream.
It can be difficult when you’re out with other children and they’re enjoying them. It’s horrible having to tell Gracie she can’t have one so I’ll buy her chocolate or sweets instead.
Even a change in temperature from outdoors to indoors can set one off, especially in winter when the difference is more extreme. I try not to let the house get cold. In fact, I never turn off the heating. During winter, I use an exceptional amount of gas and tend to get behind with my other bills and then spend the summer months catching up.
Gracie can be boiling yet still have an attack if she’s not feeling 100 per cent – stress can also bring it on.
Before the diagnosis, bath time was tricky. I’d put her into a warm bath and her skin would turn bright red just because of the sudden temperature change. It’s easier to control now because I can gradually warm the water when she’s in the bath.
I can almost pre-empt what’s going to cause a problem. We live around Raynaud’s, avoiding the things that might cause trouble.
Whenever we go out, I make sure she’s well prepared. If it’s hot, I still take a hat and scarf with me – just in case. She always takes layers and a coat, and I also take blankets with me.
On cold days, I used to put three pairs of gloves on her but now she wears special, silver-fibre ones. They’re fantastic and since she’s been wearing them, the frequency of attacks has decreased. They’re mainly made from cotton but eight per cent is silver fibre that reflects 95 per cent of the heat back into her body.
When Gracie was in a pram, people, usually older ladies, would stop me to have a look at her. Some, though, would say that I’d overdressed her. The kind of response they got depended on what sort of mood I was in. People don’t understand.
Because she looks normal, it’s difficult describing the condition unless you’ve seen it first hand.
For a while at playgroup, people tried their best to understand but it took them a while to adjust to Gracie’s condition, like it did me.
On cold days, they would wonder why she couldn’t go out to play like other children and I’d have to tell them that it didn’t matter what the other children did. Gracie could have just as much fun playing inside. It’s the way it’s got to be and she has to learn to live with it.
Gracie now takes nifedipine, a medicine, three times a day to try and open her blood capillaries to keep her temperature up. During the day, I’ll keep an eye on things and monitor her temperature.
I’m still learning new things about Raynaud’s every day. It’s scary that on online forums some sufferers talk about having had their fingers amputated and dreadful things like that. People can develop ulcers that won’t clear, gangrene can set in and that can lead to amputation. They’re extreme cases, of course, but it’s important that you manage the condition well.
Gracie understands little bits now, especially in terms of her medication, because she realises that when other children aren’t well, they have medicine to make them better. She’s starting to understand why she’s wearing the gloves, too.
My little girl has a bright, enthusiastic view on things and copes so well with her condition. She just gets on with it and always seems to be wearing a smile – she’s wonderful.”
Raynaud’s: the facts
Attacks can last a few minutes to an hour and the condition affects one in six of the population. Dr Marina Anderson, director of medical studies at Aintree University Hospital, Liverpool, says: “Raynaud’s phenomenon (RP) is a reaction of the blood vessels supplying the extremities – such as fingers, toes, nose, ears, lips and the tip of the tongue – to cold or emotion. In susceptible individuals the blood vessels in the peripheries are triggered to close off, shutting down blood flow.”
Colour changes occur in response to the cold or emotion, caused by peripheral blood vessel spasm. Classically, the affected part (usually the fingers) first goes white (due to lack of blood flow), then blue (due to the oxygen being used up in the static blood supplying the tissue) and finally red (when blood starts flowing back).
However, not all sufferers experience all three phases. The white and blue phases are associated with numbness and the red with burning pain.
It is common and, in general, is not associated with any other problem. For a small number of sufferers, the RP may be associated with one of several underlying causes. If the attacks are severe and associated with an underlying medical problem, damage to the affected part may occur.
In most cases, self-management with appropriate clothing, heated gloves and socks is sufficient. However, with more severe RP, medication is required to open blood vessels.
The condition is more common in women.