Arthritis Ireland & Team RAD join together in the fight against arthritis.

Arthritis Ireland are delighted to announce a new partnership with Team RAD, (Racing with Autoimmune Disease) for the coming year.

Kenny Bucke, Team RAD will take part in this years Working on a Cure Cycle on June 7th for Arthritis Ireland.

Kenny Bucke, Team RAD will take part in this years Working on a Cure Cycle on June 7th for Arthritis Ireland.

A cycling club for people with arthritis and other autoimmune conditions, Team RAD was established in autumn of 2014.

John Church, CEO of Arthritis Ireland said;

We are delighted to be supporting Team RAD. This partnership will help promote a positive message around Arthritis and that it can be managed effectively. We are firm advocates that regular exercise is a key part in managing a disease such as arthritis and that cycling, as a low impact sport, is a perfect fit.

As well as this members of Team RAD will be taking part in the Arthritis Ireland Working on a Cure Cycle in Wicklow on June 7th and will be raising funds to funds research into new treatments, and ultimately a cure for arthritis.

Team RAD was set up by Kenny Bucke, who first experienced symptoms of Rheumatoid Arthritis (RA) when he was 35.

“I want to show that you can still compete if you have an autoimmune condition. Training with a club like this means you’ll be with other people who understand your symptoms so we may have different ways of doing things.

I think that if you are into sports, you will find a way to do it. Even with arthritis. I hope that people will also look at our club and think that if we can cycle 100km with arthritis, then maybe they’ll think they can get out for a walk or go for a swim. It might motivate more people to get moving.”

 Over the course of the coming year, Arthritis Ireland and Team RAD will work together to increase awareness of Arthritis as a disease that affects younger people. They will also work together to promote cycling as a key part of managing their disease while looking to establish cycling groups, similar to the Arthritis Ireland walking groups.

As part of the partnership, the Arthritis Ireland logo will appear on Team RAD’s club kit which will further raise awareness at cycling events nationally of the partnership.

If you would like to take part in Arthritis Ireland’s Working on a Cure Cycle this June 7th, visit www.arthritisireland.ie  To find out more about Team RAD, visit www.racingwithautoimmunedisease.org

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.

Making the Most of my Doctor’s Appointment

We’ve all heard that it is important we play an active part in our healthcare treatment but Imagewhat exactly does that mean? Here are some of the things that I try to keep in mind when visiting my rheumatologist or physio.

1. Prepare: Before my appointment, I write down questions, items to discuss, and any changes in my condition so I can make the best use of my time with my doctor.

2. Questions: Unless I’m 100% clear on what my doctor is saying, I will ask for more of an explanation. I find that seeing x-rays or using diagrams can often help.

3. Bring a family member or a friend: Not something I have done in a while but it can make the experience of visiting the doctor less daunting. Moral support is always nice as is having someone to help you get around!

4. Describing pain and symptoms:  I find it useful to think of how I am going to describe the pain and symptoms I’m experiencing in advance so I can give an accurate description during my appointment: Where are my symptoms? How much does it hurt? When did the stiffness start? Have things changed over time?

5. Recording major events: I try to jot down anything that I think might be significant in relation to my arthritis since my last visit. For example, if I’ve been having trouble with my neck at work, I will record this at the time and tell my doctor when I visit.

6. Scaling my pain: I find it useful to give the level of pain I have been feeling a number based on a scale: 1 representing no pain at all and 10 the worst pain possible. The doctor sees this as a helpful way to track my pain levels.

7. Prioritise: During my appointments I try to ask the top things that are concerning me at the beginning rather than the end. This means that if we run out of time, I will still have had the most important things covered.

8. Write down: If I’m worried that I will forget something my doctor advises, I will ask him to write it down for me so I don’t have to be concerned about not remembering some important information or detail.

9. Keep a diary: Keeping track of all of my medication, treatments, symptoms and pain levels can be very useful over time as I start to spot trends emerging. I keep track of my overall health, not just arthritis-related symptoms so I get an accurate general picture. At Arthritis Ireland we have developed ‘My Health Organiser which is a handy place to store all of that information. There are also a number of mobile apps available that you can download for your phone.

For more tips on making the most of medical appointments check out ‘Let’s Talk Arthritis’ information booklet.

Laura Hickey is Arthritis Ireland’s Young Arthritis Ambassador. If you have any questions or would like to join the Young Arthritis Network, please email lhickey@arthritisireland.ie.