Diary of a Mini Marathon Runner: Veronika’s Story (Part 2)

By Veronika Kapsova

Flora Women's Mini Marathon

Me in my Arthritis Ireland t-shirt

I have been training since last November, shortly after I got out of the hospital and back on my feet. It was very hard as I was in constant pain and as my new medications were still quite new and hadn’t kicked into the body properly, it took a little adjusting. I was careful to take it easy and to really take one step at a time so as not to do too much. I found that the little things that I was doing were making a big difference.

For the past few months, my training has been back to full swing concentrating on strength, high resistance and cardio. I am training for the Mini Marathon with my friend Emma and sometimes other friends join us. Training together helps make us stronger and pushes us to reach our own personal goals.

At the moment my training usually consists of 10km runs, cross training, arm strengthening, Tae Bo, some tennis and more. I try to work out up to 6 days per week if I’m not sick and I usually take one rest day per week.

In the past 2 weeks I haven’t been able to train every day or stick to my sessions with the other people I exercise with as I had ongoing migraines and was feeling constantly sick. I also had joint pain that flared in my arms and knees. I stopped training for a couple of days but tried swimming instead. I got back training again for a few days but had to stop due to the pain I was feeling.

It is not only the pain that was affecting me, but also I am in college at it is a really busy time at the moment. I had practical exams at the end of March followed by written exams in April/May. Every day is really busy. I try to exercise after college and might not get home until 10pm. With assignments it could be past midnight before I am finished. Time management is really important as sometimes I feel like I should exercise but I know that my college work will suffer. If I chose my assignments, then my training will suffer. I have to work hard at balancing the college work and my fitness. My family tell me that sometimes I don’t know my limits, but they are really supportive of me and what I am doing.

Taking part in running events is a really big motivation for me. The first run I did really helped me to reach my personal goals. Since then I have used them as motivation to keep training. I am managing something that I always thought would be impossible.

Being active really helps me ease off and de-stress. I also find that things like Yoga really help me.

I have really learned that with the correct motivation, everything is possible and I can achieve anything I want. Moving is definitely my best medicine.

Here are some helpful tips to help keep you motivated with your own exercise.

1: Set yourself a goal – Why not sign up to take part in the mini marathon on June 2nd and raise money for Arthritis Ireland. Stick your registration letter on your fridge, or somewhere you will see it every day as a reminder that you are going to do this.

2: Start slowly – Don’t run before you can walk! Why not join an Arthritis Ireland walking group in your area. Build up the intensity and distance of your walks slowly. Seeing your achievements will really motivate you.

3: Get a Training Buddy – Veronica trains with her friend Emma and this motivates them both. Why not make arrangements to exercise with a friend or family member. If you have a “date” with them, you are much less likely to miss your session.

4: Warm up & Stretch – make sure you warm up properly before starting. When you sign up to take part in the mini marathon for Arthritis Ireland, you will receive a full training pack with lots of useful and safe stretches and exercises.

5: Variety is the spice of life – just as veronica changes her routine with different kinds of exercises, try out things like swimming, aqua aerobics, an exercise bike and walking. Find what suits you at a specific time. Swimming can be great when you want to ease the pressure on your joints.

6: Spread the Word – Tell your family and friends what your goal is and why. As them for sponsorship & tell them why it will make a difference. Ask them for their support. You may be surprised at who you motivate to get involved too.

To read Veronika’s first post click here.

Click here to register your interest or for more information in taking part in the Mini Marathon on behalf of Arthritis Ireland or call Orla on 01-6470209.

“Change the Record on Exercise & Arthritis” – RTE Star John Murray

Walking Champion John Murray Urges People with Arthritis to ‘Change the Record’ on Exercise for Moving Is the Best Medicine 14

Now I realise that I should have tuned-in to exercise sooner. Some of the damage could have been avoided.RTE Star Reveals

Irish people need to ‘change the record’ on exercise as many still believe it does

Exercise & Arthritis

RTE Star John Murray

more harm than good for arthritis – despite overwhelming evidence to the contrary. That was the key message highlighted by RTE star John Murray and Arthritis Ireland today at the launch of Moving Is the Best Medicine 14.

Having lived with psoriatic arthritis since he was just 18-years-old, the Dublin-based DJ, is looking to raise awareness that exercise is a vital part of the prescription for arthritis. It follows a new survey of people with arthritis which exposes a worrying lack of understanding in Ireland around exercising with this chronic disease. Conducted by Arthritis Ireland, the survey of more than 270 people found that one-in-five continue to view physical activity as something that will increase their pain and make their arthritis worse.

Arthritis is the single biggest cause of disability in Ireland, affecting almost one million people from newborn babies right through to the elderly. There is no cure, but there is a lot that people can do to reduce the impact of arthritis on their lives. Exercise plays a central role in this self-management.

Dublin Rheumatologist Frances Stafford, John Murray & Sinead McGuinness

Dublin Rheumatologist Frances Stafford, John Murray & Sinead McGuinness

Murray has not always been aware of the positive effect of exercise and only in recent years has he reaped the benefits through walking and cycling.

“It’s time for people to change the record on exercising with arthritis as the evidence of the benefits is clear,” John said. “I was diagnosed with arthritis when I was just 18-years-old and I thought that because I was in pain it was better to rest my joints. Then in 2007, I made a conscious decision to exercise more. I started walking and lost nearly two stone in weight. Now I realise that I should have tuned-in to exercise sooner. I have irreversible damage to my feet, some of which could have been avoided.”

Every kilogram of excess weight a person carries equates to 4 extra kgs of pressure on the joint, making weight-loss one of the major benefits of exercise for people with arthritis. As well as that, exercising strengthens the joint’s support structure such as the bones, muscles and tendons which in turn reduces stress and pain in the joint.

In the past doctors prescribed a sedentary approach to treating arthritis with patients advised to minimise physical activity. However, we now know that strategy only served to weaken damaged joints further.

Arthritis Ireland CEO John Church said: “As part of Moving Is the Best Medicine ‘14,

Exercise & Arthritis

John Murray, Erica Mitchell & Sinead McGuinness

we are working to increase understanding that even a small dose of physical activity, whether it’s walking to work instead of driving or taking the stairs instead of the elevator, can dramatically improve a person’s arthritis symptoms. It is recommended that people with arthritis start slowly and build up to at least 30 minutes, five times a week. Arthritis Ireland’s ‘Physical Activity and Arthritis’ booklet includes detailed information on building and maintaining an achievable exercise plan.”     

As well as the Physical Activity and Arthritis booklet, Arthritis Ireland has an exercise website which features our network of exercise groups in communities across Ireland. The programme includes walking groups, aqua and hydrotherapy classes and seated exercise classes (in partnership with Siel Bleu). For more information, log on to ArthritisandExercise.ie or call our exercise hotline on 1890 252 846.

 

The Path to Better Arthritis Care

It’s a tale of two very different patient outcomes. Just a few years ago, a person experiencing symptoms of rheumatoid arthritis (RA) faced a worrying and uncertain future.

Long waiting lists for consultants meant delays in accessing appropriate treatment, often leading to avoidable joint damage, expensive surgery and a grave impact on every aspect of a person’s work, social and family life.

Fast forward to 2014 and the outlook is brighter. Today, a person developing RA can expect to be prescribed effective treatment within weeks. Thanks to the vast strides made by the HSE’s National Clinical Programme for Rheumatology and the supports and services offered by Arthritis Ireland, people with RA are enjoying healthier lives.

However, although progress has been made in recent years, there’s still a long way to go for Ireland to be recognised as a global leader in rheumatology patient care.

Untitled-1As Arthritis Ireland’s CEO John Church explained: “When Arthritis Ireland first got involved in advocating for better services, Ireland had the worst record in Europe. We had extremely long waiting lists and approximately one consultant per 400,000 people. We’ve learned that quicker access to treatment decreases the risk of disability and also helps to avoid social isolation and unemployment.”

As part of the HSE’s National Clinical Programme for Rheumatology, Arthritis Ireland has been working to inform the strategies around improving rheumatology care in Ireland.

Since the programme’s launch in 2010, seven new public consultant rheumatologists have been appointed, bringing the consultant:population ratio to 1:135,000. This includes the appointment of a second consultant paediatric rheumatologist to Crumlin Children’s Hospital, who is working to treat children with juvenile arthritis.

HSE Clinical Lead

Prof. OIliver Fitzgerald, HSE Clinical Lead

The programme’s clinical lead Professor Oliver Fitzgerald says it’s still not enough, but it’s certainly progress.

“The number of consultants has gone up from 26 to 33”, he explained. “We were never going to get all we needed overnight, and I’d like to bring the number closer to 50, but we’re moving in the right direction.”

The new appointments are mainly outside the Dublin region, making life easier for people in areas which were not previously served by a rheumatologist.

Another major development has been the appointment of 24 specialist MSK physiotherapists who have so far reduced the orthopaedic and rheumatology waiting lists by 20,000.

“Most of those patients would have been triaged to the physiotherapists because
we felt that they had issues which were non-inflammatory in nature so they did not require a consultant. It meant that they were seen faster and given the appropriate advice or treatment and the consultants’ time was freed up for inflammatory patients”, said Professor Fitzgerald.

Another key aim is the development of an efficient primary care service which will allow more patients to be treated in their local community, avoiding long journeys to hospitals.

More nurse specialists will also be needed to deliver the proposed Treat to Target programme which will decrease the chance of the condition progressing by reducing a person’s Disease Activity Score.

Professor Fitzgerald added: “We’re also working on a national model of care for patients with RA and it will be a blueprint for how services will be developed across the country.”

Undoubtedly, there’s a long road ahead for rheumatology services in Ireland, but it’s clear the journey is well underway.

Untitled-3Professor Fitzgerald said: “Waiting lists haven’t been reduced enough but they’re far better than what they were. Fortunately the level of joint damage and disability is something we’re not seeing any more. The initiatives we are proposing now will ultimately save money because if we can implement a programme of early intervention and care, we can reduce the number of expensive therapies and surgeries. We’re a long way from saying that a patient developing RA anywhere in the country will receive a certain standard of treatment, but we have made good progress.”

As well as advocating for better healthcare services, Arthritis Ireland’s Living Well with Arthritis programme has empowered thousands of people to play a more active role in managing their arthritis.

The organisation is also funding two dedicated Chair of Rheumatology research posts which will lead to new, more effective treatments. And its work with the Irish College of General Practitioners has helped educate GPs to recognise and respond to the early symptoms of arthritis.

This article is taken from Issue 5 of Arthritis Ireland’s Big News magazine. You can receive this magazine by Becoming a Friend of Arthritis Ireland.Become a Friend Now.

“At one point I had lost total faith that I would ever be well again.”

My name is Veronika Kapsova and I have been living with arthritis since the day I was born.

I will be 20 in March and in the years in between I have been under constant attack DSC09346by this violent disease. Worse than acid poured over your joints. That is the only way to describe the inflammation and pain I’ve had to live with. I’ve even been temporarily blinded. Not something most people expect when they hear the word arthritis. But that is my reality.

When I look back at what I’ve gone through, it is extraordinary to think that this year I will be taking part in the Flora Women’s Mini Marathon. It’s a 10km course that will test me to the very maximum. I’m confident I can do it though. I’ve conquered greater challenges!

In the lead up to this year’s event I will be posting regular diary entries here on the Arthritis Ireland blog. I hope you enjoy reading them and are motivated to join me on June 2nd. This is my first entry….

I was born in the Czech Republic in 1994 and although I have had problems with arthritis since then, I was 2 years old before I was diagnosed properly. Two diagnoses to be specific: Systemic Juvenile Onset Rheumatoid Idiopathic Arthritis, and a little while after that, Psoriatic Arthritis.

As a baby, I went through a massive amount of different and really invasive medical tests. Doctors were at a loss as to what was wrong. Eventually they diagnosed me. Receiving the necessary treatment to counteract this disease was the next logical step right? Wrong.

There was no specific medication to cure such a condition at the time. The only thing that kept me going since I was about 6-years-old were anti-malarials and steroids which were grossly inadequate in the face of the violence my immune system was inflicting on me every day.

The systemic type of arthritis that I have is the worst and rarest of all forms. Only about 3% of people in the world get it.  It affects the whole system – small bones, big bones, internal organs, brain, visual nerves and much more. As I mentioned above, one flare attacked my visual nerves which left me temporarily blind and not long after that I ended up in a wheelchair unable to walk.

In terms of my life, I found myself under the thumb of this disease. It decided what I did, not me or my family. And it never ruled in my favour. I wasn’t able to attend school. I was unable to do anything physical including walking, running and writing. I was unable to be near anyone who was sick or even had a slight head cold. I would get sick within 24 hours and would be sick for a while. I am still the same now.

My mum homeschooled me in cooperation with my teachers and principal. My mum is a surgical nurse and when she was working my brother would help with my schooling. Despite everything I always managed to pass all my exams.

Veronica-Kapsova-(2)Eight years ago I moved to Kilkenny but the upturn in my health I’d hoped for didn’t happen straight away. In fact it got a lot worse before it got better.  Since then I have had a brain tumor – benign intracranial hypertension which required numerous surgeries, I was treated for meningitis and diagnosed with chronic migraines and systemic Still’s disease.

At one point I had lost total faith that I would ever be well again. I had been through so much I just wanted it all to stop and live normally like all my other friends. To be honest there wasn’t a time I didn’t think of suicide. I was young, helpless and stupid.

Thankfully there was light at the end of the tunnel. Today I receive a monthly biologic injection now called Tocilizumab (Actemra) and these infusions have helped me to get myself off the ground again. I’ve started to do the things I was used to and also the things I always wanted to do. I am so grateful to my doctors, especially Dr. Orla Killeen, my previous rheumatologist in Crumlin Hospital and Dr. Paul O’Connell, my current rheumatologist in Beaumont Hospital, for all their efforts in helping me to get better. Since I have been on these treatments I have joined the gym again and started exercising regularly and strengthening my body even if my joints or stiff or my body want to fight me because I will fight back.

Nothing stops me. I go in and do what I have to do because I love doing it. I can feel DSC_0110--tired after. I am not thinking about when my body will fight me. I am staying positive and I am still here and planning my future – like training for the Flora Women’s Mini Marathon in aid of Arthritis Ireland.

I cannot wait for June 2nd when I get to join dozens of other women living with arthritis who are walking, jogging or running this race. I will be doing it for myself and the thousands of others out there who are facing the realities of living with arthritis. I hope you will join me on the day too…if you’re a woman of course!

DSC08431--The reason I chose to do it for Arthritis Ireland was down to all of the support they gave me when I was younger. In 2008 I attended an activity weekend break (now the JA Road Trip) with a friend of mine. I enjoyed it so much and realised that I was really thankful to have that support. Today I’m a committee member of the Arthritis Ireland branch in Kilkenny and I try to get involved as much as possible. I am proud to be a member of Team Arthritis Ireland for this year’s Mini Marathon.

Why not join Veronika in signing up to Team Arthritis Ireland for the Flora Women’s Mini  Marathon? Register here.

How does it feel to be the brother or sister of a child with JA?

It’s fair to say that juvenile arthritis affects more than just the child living with the Laura Hickeycondition and those who are sometimes overlooked are siblings. As an adult living with juvenile arthritis reflecting back upon my childhood, I can see that my disease had a major impact upon my siblings.

The diagnosis, as you all know, can be devastating for the whole family. For my siblings, it wasn’t the easiest of transitions making do with less time with my parents as we got used to this new journey. Regular trips to Crumlin meant that my parents often spent time away from home, which to my sister seemed really exciting. “The big trip to Dublin” was the idea but the reality as you know is far less glamorous.

My siblings are much younger than me so for them it was very difficult to understand, they simply just understood that something had changed. As they got older they understood more and their reaction to me being sick changed for the better. Asking more questions and lending a helping hand when needed, we all began to find the correct balance.

Working with families living with JA, I know that my siblings were not alone in finding a JA diagnosis to be a difficult transition. Siblings often find it hard to understand why little time is left for them.

It’s normal for siblings to feel a range of difficult emotions:

  • Confusion about the overall illness
  • Helplessness
  • Jealousy over unequal parental attention
  • Guilt that they are healthy
  • Fear that they will also get JA

There are lots of ways that your family can cope with the negative impact JA can have on the family:

  • Explain to siblings exactly what is happening. Create an environment whereby siblings can ask you questions. If siblings are young perhaps order a copy of Jasper & Chloe’s Joint Adventure and read it to them. For older siblings maybe go through our JA website juvenilearthritis.ie
  • Another idea is to bring siblings along to the occasional appointment so that they can see the reality of a hospital visit.
  • Make a home physiotherapy exercise plan where all the family participates. This creates inclusive environment for the entire family.
  • Make everyone feel special. Have plans to spend one-to-one time with siblings. Maybe it’s a girls day shopping, a trip to the cinema or a football match. If time is an issue, perhaps taking an extra special interest in their favourite activity or kicking around a football for twenty minutes.
  • During a flare-up or times of stress, it is easy to feel overwhelmed. Take things one day at a time, don’t be afraid to change or adapt plans.
  • Avoid giving the child living with JA too many special concessions. This can cause a lot of jealousy among siblings. For example, find tasks or chores for each sibling to do to ensure that everyone has something that they can carry out.
  • Explain to siblings that difficult emotions are normal and it’s ok to talk to you about these feelings.

If you have any questions or queries about supporting your family, please don’t hesitate to get in touch. Email me at lhickey@arthritisireland.ie or phone (01)6470210.

Major focus on arthritis at first approved Irish stem cell manufacturing centre

Arthritis will be a key focus area for a new manufacturing plant in Galway, the first inNational University of Ireland Galway Ireland to be approved to culture stem cells for human use.

The Irish Medicines Board issued the licence for the pioneering facility, based in NUI Galway, which aims to tackle a number of conditions as well as osteoarthritis, including heart disease, diabetes and associated conditions.

The centre, which has been developed by researchers at NUIG’s regenerative medicine institute, is one of a select few in Europe authorised for stem cell manufacture,

Stem cells work to repair the body and can be isolated from tissues such as bone marrow and fat, and cultured in laboratory settings.

More controversially, embryonic stem cells have been highly valued for their ability to turn into any type of cell in the body, but scientists can now use reprogrammed adult skin cells to create a stem cell that is very similar to embryonic versions.

Minister of State for Research and Innovation Seán Sherlock is launchjing the centre today with the facility’s new director Prof Tim O’Brien.

Mr O’Brien said that the stem cells must be grown in the laboratory to generate sufficient quantities, following their isolation from the bone marrow of adult donors, and the facility will help Ireland to develop therapies for a broad range of clinical problems, such as arthritis, which do not have effective treatments today.

Director of REMEDI

Prof. Frank Barry

“It will also allow us to translate discoveries from the basic stem cell research programme led by Prof Frank Barry at the Science Foundation Ireland-funded REMEDI to the clinic, and to be competitive for grant funding under the Horizon 2020 programme of the EU,” he said.

“We can only engage in clinical trials with clinical authorisation from the IMB and approval from the hospital ethics committee, and we are currently seeking such approval for clinical trials,”he said.

“The license to manufacture is an essential pre requisite to seek permission to undertake clinical trials. The license certificate must be included with the clinical trial authorisation application.”

NUIG president Dr Jim Browne said the centre develops Galway’s role as a “med tech hub of global standing”, while Irish Medical Devices Association board member John O’Dea has pointed to the lucrative revenue to be earned from regenerative medicine products, valued at about €1.3 billion in 2013 and with a 40 per cent sales growth last year.

Some 70 per cent of pharmaceutical companies are working on regenerative medicine therapies – an area described as a crossover between biology and engineering – and NUIG estimates that there are over 1,900 cell therapy clinical trials under way globally.

Arthritis Ireland welcomes the announcement of the new approved facility which is a significant development towards finding new treatments for people living with osteoarthritis.

For more information, visit the NUI Galway site here.

People with Osteoarthritis Benefit from Glucosamine and Chondrotin Supplements – Study

Two commonly-used supplements in the treatment of osteoarthritis do have glucosaminebenefits for people living with the condition, new research reveals.

A new study from the University of Montreal Hospital Research Centre in Canada found that using a combination of glucosamine and chondroitin sulphate to treat osteoarthritis can prevent joint deterioration.

Osteoarthritis is the most common form of arthritis and usually develops gradually, over several years, affecting a number of different joints. The cause is unknown and currently no cure currently exists. Treatment is limited to pain relief, self-management and joint replacement for severe cases.

To conduct the research a total of 600 patients with knee osteoarthritis were divided up, based on whether they received conventional pharmacological treatment and/or  glucosamine/chondroitin sulphate over a 24-month period, before being assessed for knee structural changes using quantitative magnetic resonance imaging (qMRI), an advanced medical imaging technique.

Results published in the Annals of the Rheumatic Diseases revealed that patients taking glucosamine and chondroitin sulphate experienced a reduction in cartilage volume loss over the two-year period.

This beneficial effect was seen regardless of whether the patients were also receiving a more conventional treatment using analgesic therapies or non-steroidal anti-inflammatory drugs (NSAIDs).

It was also revealed that many of the positive effects of these supplements could not be detected using standard x-ray imaging, but were demonstrated by using qMRI..

An Arthritis Ireland spokesman said: “We very much welcome any evidence that points to effective treatment for osteoarthritis as it is an extremely painful and debilitating condition that affects hundreds of thousand s of people in Ireland.  However, it is important to note that this is just one isolated study as glucosamine and chondroitin have both been subject to a large number of clinical trials with varying results.”

*NOTE: For anyone with osteoarthritis who is taking the glucosamineglucosamine sulphate solution Dona, it is now available from your pharmacist without prescription.