Tuesday 16 July 2019

An agonising illness that make your blood run cold

It can starve the extremities of blood, causing agony, even deformity, and attack the body's vital organs. Yet many have never heard of Raynaud's Disease and its associated conditions.

Sufferer Maedhbh Cleary took part in the recent Raynaud’s Awareness Week
Sufferer Maedhbh Cleary took part in the recent Raynaud’s Awareness Week

Áilín Quinlan

AT FIRST glance, Maedhbh Cleary's not your usual twenty-something. She cannot wear the short, skimpy evening dresses and high heels sported by other women of her age.

She can no longer drive, and, if the weather's cold, she'll probably cancel a night out with the girls at the last minute. All of this makes her social life a bit difficult.

"I cannot dress in skimpy, pretty clothes on a night out," the 27-year-old Dubliner explains. "I have to layer my clothes – I can look like an Eskimo!"

Her outfits are a world away from the skimpy dresses or tops and mini-skirts worn by most 20-somethings.

Maedhbh may well turn up to meet her pals for a night out, bundled up in layers of warm clothing and with her hands covered by bulky ski gloves.

"I have to wear really warm clothes and I cannot wear high heeled shoes because it puts pressure on my toes and they'll go numb and this will affect my balance.

"If I cannot go somewhere because it's freezing or very cold, some people won't understand – they think it's because I don't want to be there or they might take it personally."

Maedhbh has Raynaud's disease, a condition in which the flow of blood circulating to the fingers and toes constricts in response to even moderate cold or stress.

This causes pain and numbness and prevents her participation in many ordinary activities.

It's not the same as simply having cold hands or feet – Raynaud's results in dramatic colour changes in the hands and fingers or toes, from white to blue or red.

The condition can mean agony for the one in five women and one in 15 men in Ireland who have the condition.

For sufferers, any slight change in temperature, such as walking into a room which has air conditioning, can cause the extremities of the body to become starved of blood.

This can make fingers and toes turn white, then blue and finally red as the blood is restored, causing immense pain.

With this condition, some patients have ulceration which causes extreme pain and can even lead to amputation and deformity.

For Maedhbh, having the condition means some very severe lifestyle restrictions.

"Driving can be an issue because my hands can get stiff or numb as a result of the Raynaud's, and I am concerned about my reaction times," she explains.

Which is why Maedhbh, who also suffers from fatigue as a result of the condition, was one of the experts on Raynaud's who met with a group of Transition Year students from schools all over Dublin recently, as part of an awareness week to try and highlight the condition.

An estimated 50% of sufferers are not even aware the condition exists – it was only in later years that Maedhbh came to realise she had had Raynaud's since the age of 17.

But that's not all. Maedhbh is one of the small group of Raynaud's patients – just two percent – who have one of the secondary conditions, Lupus, Rheumatic Arthritis or Scleroderma – which can accompany the condition.

Maedhbh had Scleroderma for many years, but was only diagnosed with this rare, chronic, autoimmune connective tissue disease in 2009.

Scleroderma is an over production of collagen in the skin, which results in a hardening of the skin and the connective tissue of the internal organs.

Maedhbh's Scleroderma affects her hands and feet, but her internal organs are also at risk, so she undergoes six monthly check-ups.

Yet, she says, she had signs of both conditions from the age of 17 – in Leaving Certificate year, for example, the Raynaud's made doing written homework and sitting exams so difficult that she would sometimes have to stop for 20 minutes to relax her elbow and wrist.

It's important for young people to recognise the symptoms of Raynaud's or Scleroderma, she emphasises, warning that the discolouration of fingers or toes, and joint or knuckle pain, which accompany Raynaud's, can often be dismissed as simply poor circulation.

"Also, in very rare cases, you would also see signs of stiffening skin where the hand starts to curl inwards – that is scleroderma," she warns.

A much better awareness of Raynaud's Disease is badly needed, agrees the organisation's Outreach and Support Nurse, Anne Fahy.

"People have no awareness of it until they produce symptoms themselves and go to their GP, or look it up on the internet.

"There's a complete ignorance about it – patients will talk about their hands getting cold or numb or turning blue in winter, or that they were wearing gloves, but they never investigate it further," she says.

This massive public ignorance is something that teenagers can help alleviate, believes Maedhbh, a second level history, religion and SPHE teacher.

"Teenagers are great communicators, they will go home and talk to family and friends about this and the message will get out very quickly," she says.

Raynaud's and Scleroderma Ireland is also working in other ways to tackle this lack of awareness, says its executive director, Michelle McGill.

In the pipeline is an online programme of education designed to empower patients to take control of their condition.

"This will have information about nutrition, exercise and positive mental health, and how to prepare yourself to get as much information as possible from your medical team – in other words, knowing what to ask," she explains.

The group has also prepared a special Patient Passport.

"This is a tool with all the details of your condition and a breakdown of what you are eating, how you are feeling, and the exercise you are taking – you can bring this to your doctor," she adds.

The Passport was launched at the annual conference at the Gibson Hotel last Saturday, at a one day conference as part of Awareness Week.

Educating people in how to cope with Raynaud's is crucial, she believes – "there is no cure.

" Most people in Ireland who have colder fingers or hands than normal would probably put it down to poor circulation, she says, adding that many people will phone the organisation and say they thought they had bad circulation until they went to the doctor.

"They just get on with it – we will get people who would call us and say they just put on gloves or wear extra clothes but, in actual fact, what is happening is the blood is flowing from the fingers to the body's core, because the core is cold, so putting on a pair of gloves is not going to fix the problem.

So, for the group, it's about educating people on how to keep warm."

SHE'S lost her home, her job and her lifestyle – the onset of Raynaud's Disease and Scleroderma devastated the life of former legal secretary, Claire Brennan.

Claire can no longer drive, cook or even go for a short walk alone, because of the effects of her condition.

It all started in 2006 when Claire, now 36, was working in Dublin.

"I had decided to move to Cavan and buy my own house there. All my family were based in Cavan and prices were more reasonable," she explains.

All went well at first – she found a job, bought a house in November 2006 and moved that Christmas.

She was due to start her job in February 2007.

However, around this time, she wasn't feeling good. "My energy levels were low," she recalls.

She also noticed she was losing weight, but put this down to a healthier rural lifestyle with better food and more walking.

At the same time, she was feeling cold and 'flu-ish'. In May 2007, Claire noticed she was having a lot of diarrhoea, and ulcers had started to appear in her mouth.

She consulted her GP, a series of medical tests ensued and, in early July, Claire was referred to the Rheumatology Unit in St Vincent's Hospital, Dublin.

Here, she was diagnosed with Mixed Connective Tissue Disease, an umbrella term for a number of conditions including Scleroderma.

By then, her weight had dropped from nine and a half stone to seven stone.

Claire was put on a treatment regime similar, she says, to low dose chemotherapy. This continued until February 2008, by which stage Claire's condition had improved and she had started to gain weight.

Then came more blows – after developing an ulcer on an index finger in 2009, she was diagnosed with Raynaud's Disease. In 2010, a severe infection left her in need of blood and iron transfusions and required a hospital stay of several week.

"I was very frail, very emaciated," recalls Claire, who now lives with her parents.

She is acutely aware of the public ignorance surrounding these conditions and wants to see them highlighted.

"In August 2007 when I was diagnosed with Scleroderma, I didn't know what it was.

"I didn't realise I had Raynaud's until 2009 when I developed an ulcer on the tip of my right index finger. I hadn't heard of Raynaud's before I was diagnosed either."

Eventually she gave in and resigned from her job – she had been working five days a week and found it increasingly difficult to keep going.

Her weight dropped back to about seven stone. The following October, she was put on the chemotherapy-type medication that she had benefited from two years earlier.

Again, she put on a little weight and got some energy back.

Last summer, however, she was laid low by another infection and required another set of blood and iron transfusions.

Her weight dropped to under six stone and she was in hospital for four weeks.

"I was unable to get out of bed or even lift myself up in bed I was so weak."

By September 2013, her weight had dropped to five stone and she couldn't walk independently.

She is now on medication to stop the progression of the disease and, she says, it seems to be working.

Her weight has climbed to just over six stone. However, Claire is also suffering from a major effect of the Scleroderma, the over-production of collagen in which the skin hardens and tightens.

"My hands are closing in on themselves. The fingers on my left hand are tightening to such an extent that the hand is almost useless – it is almost tightening into a claw," she reveals.

Although her right hand is still functioning its strength is limited. Over the years the skin around her mouth has also slowly tightened.

Because of the Raynaud's Disease she constantly feels cold.

"You have to make sure that if you are going out, that you have your hat and gloves," she says.

But for Claire, even putting on her gloves can be difficult as one hand is curled inwards due to Scleroderma.

"You have to learn to live in a different way to the way you lived before. You have to be very mindful of what you do," she says.

For more information visit : www.irishraynauds.com

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