Your stories

My body may have let me down, but my heart has never missed a beat.

01/01/2015 – New Years Day

SOMETHING’S WRONG

“Today should have been a day full of celebration and excitement, yet the reality has been the opposite of what it should have been.

“Waking up really excited, I leapt out of bed. My knees felt so stiff and my heart was pounding: something was not right. I had been feeling bad for the past few days but just thought it would go away; I even told Mum but she’s been to busy with Christmas (like all Mums are) and kept telling me my aches would go away.

“As the day went by, my heart refused to calm down and my knees became stiffer and stiffer until I had to lie down and rest. Mum told me that she’d book an appointment, which I was pleased about – thinking about it, I really must be poorly because I normally hate going to the Doctors.

“Hopefully the Calpol will help me sleep tonight.”

17/04/15 – The day of the appointment.

THE DIAGNOSIS

“It seems like such a long time ago when we all this started. We drove for ages, or what seemed like ages, towards the special hospital (I think it was called “The NOC” but I’ so tired I can’t remember.

“When we arrived, we booked in and we were sent to the child’s place: it will take five hours to see me! Hearing Mum chatting to Dad made me question what they were talking about; hopefully it wasn’t anything bad!

“After a while, I started to read my book, “Wonder”, that’s what we are reading in school. It reminded me of my friends and I thought how lucky I was not to be like August.

“Two hours later, I had finished my reading book and had nothing else to do, so I started to play on my Mum’s phone to distract me from the way I was feeling. My hands were sweaty, I had butterflies and my head had started to pound.

“Elaine was my Consultant in the Orthopaedics department. Being quite tall, she had to kneel down to talk to me. I remember noticing just how tall she was because her trouser legs looked super long and so did her clothes. She actually reminded me of a person on Cbeebies who I used to watch when I was little, however, I have forgotten her name.

“Mum looked a little nervous, which made me feel nervous too. The questions kept coming and I struggled to answer them because there were so many and I couldn’t keep up. Mum kept telling me she loved me and squeezed my hand really tight while she kept a really close eye on Elaine, probably to try and work out what was happening.

“My parents and I waited outside for another three hours while they checked the results of all the tests: heart scans, ultrasounds, blood tests and blood pressure. No-one had said anything. Finally Elaine called us into the room … She showed us lots of x-rays and spoke in some words I didn’t understand. Apparently, I had a thing called Arthritis.”

16/06/2015 – The Future

EVERYTHING GETS BETTER

“Despite a year of hell, things are slowly getting better, I still have good and bad days, definitely but most of them are good now.
The last bad one was the last day of SATS week: Friday 15th May. Miss Price had promised that we’d be able to use the new ROMO Robots all afternoon and I was so excited! SATS weeks had been stressful because I was so worried I’d feel sick or something (in the end I was really fine – through all the tests Miss Price kept on checking me which was funny!)

“That Friday morning I woke up as normal and my heart sank because I knew I had another appointment and if it was bad I was going to miss the Robots. Elaine had become like a friend and she had a lovely Irish person with her this time; Dad kept trying to make her laugh by talking in a terrible Irish accent which was a bit embarrassing! As Elaine pushed the massive needle into my leg, I didn’t look but I knew it was massive because Dad said so. The magic cream helped but it still really hurt and my eyes fuzzed with stinging tears. Determined to get back to my class and the Romos, I told everyone I felt fine and so I went to school.

“These days I just get on with things and they said it might go away in the future so hopefully it will. Meanwhile I am carrying on as normal and I’m used to the needles and the injections Mum does for me every week (she’s been on at me for ages to write a diary so I might show her this sometime) Thanks to her I feel much better and I’m really looking forward to next year it should be good.

“If I had to sum up the year, I would say that bad things have happened, but there are loads of good things still to come and over all I’ve definitely enjoyed this year probably more than any other.

“My body may have let me down but my heart has never missed a beat.”

No matter what you want to be in life, it can be done

Written by CCAA Executive Committee member, Jazmin Scarlett. Jazmin has suffered with Juvenile Arthritis all her life. She tells us her inspirational story…

“I have had Systemic Onset Juvenile Idiopathic Arthritis for 23 years now. It was tough having flare-ups and fevers, hospital appointments, steroids, methotrexate and physio and hydrotherapy. Of course, this was on top of growing up as a kid and a teenager. I loved school and learning, when I was younger it was art and geography, but as the arthritis got worse in my right wrist, my interest in art lessened and my passion for geography and science grew.

“It is not often a child develops JIA as young as I did, but having it for so long, puts my experiences different to those that may develop the condition later. Because I grew up with it, I have always known my body to be in pain but, developed a high pain threshold. I grew up quiet and introverted, but not afraid to ask for help and socialise when my energy levels are good enough, and I have grown up to be very empathic to other people’s pain. I am unsure if I would have these personality traits if I did not have JIA.

“My passion for geography has stuck with me since being hospitalised for months on end in Great Ormond Street Hospital when I was very young, and I took it at GCSE level, A Level, undergraduate level, master level and now PhD level.

“Becoming a volcanologist is not just fulfilling a life dream, but a statement to the JIA community that no matter what you want to be in life, it can be done despite the condition.

“Today my condition is manageable, just have to worry about chronic pain and chronic fatigue.

“As an executive committee member of this wonderful charity that helped my family and I so long ago, I am doing everything I can to show parents, with a JIA child, the empowerment of understanding the condition and what support can be given.

“My advice is to continue supporting and giving your children a positive and nurturing attitude, but once they get older, hand over responsibility and ‘let go’ to allow them to grow into a wonderfully independent young adult.

“For the child with JIA, I aim to be living proof that JIA is just part of you, and you should get on achieving what you want to be despite of it.”

Jack’s Story

Written by Lisa, Jack’s mum

“My son is Jack, he is 11 years old and was diagnosed with JIA at 13 months old. His passion is trampolining. This is him in his first ever competition – he trains 12 hours a week and his goal is to be part of team GB. He is totally amazing and an inspiration!”

Don’t let your arthritis beat you

Written by Olivia
“I was diagnosed in 2007 when I was 5 years old. I don’t remember much from the beginning of my diagnosis, but I do remember being put to sleep for my joint injections. I now have these done whilst I’m awake and honestly its fine. I take Methotrexate…20mg and it makes me feel really sick, but it helps my joints and allows me to be the sports person I am. I’ve recently been made a young leader of sport at my school and it’s an honour to help others. I’m also a county level gymnast and train 8 hours a week. My parents and consultant have always supported me in all I choose to do. I hope that you all achieve your hopes and dreams too. Don’t let your arthritis beat you xxxx”

Don’t let your children give up on their dreams

Written in April 2015 by Charlotte Woodward

“With London marathon this weekend I’m sure that at least one of the children affected by JIA in this group will be watching and dreaming that one day they could do someone like that but then realising with their JIA they probably will never be able to. Just like I did when I was a little girl. But last year after 25 years of JIA in every joint I completed my dream and finished London marathon. On the one year anniversary I had surgery to fuse my wrist and am now going through the slow process of recovering whilst flaring in my other arm. Challenging.
“What I’m trying to say is don’t let your children give up on their dreams, with sheer determination alone they can succeed at anything if they want it bad enough.”

10 miles on a unicycle!

Written by Kerstin Morrison.
“My 11 year old daughter, who has polyarticular JIA, cycled 10 miles over Easter on her unicycle to raise £535 for Sheffield Children’s Rheumatology Department.”

Charlotte is back on form and winning medals

Written by Sara Richards, about her daughter Charlotte.

“Charlotte is 7. She was diagnosed with Polyarticular Juvenile Idiopathic Arthritis in May 2013, age 5. Her knees, ankles, hips, elbows and fingers have been affected. In particular her knees and ankles, meaning at times Charlotte has been unable to walk at all. To treat her JIA Charlotte has had steroid injections 4 times in multiple joints under general anaesthetic. To control her arthritis Charlotte has a fortnightly injection of Humira, twice daily cellcept tablets and monthly blood tests.
“In November 2013 Charlotte developed Uveitis, which is a sight threatening condition associated with JIA. By March 2014 Charlotte was already blind in her right eye. She needed urgent major eye surgery which she had in July 2014 at the Evelina Children’s Hospital in London. She had a lensectomy, vitrectomy and capsulectomy. The surgery was a success and Charlotte’s sight was restored, but Charlotte needs a contact lens and eye drops many times a day on top of the other treatment she already receives.
“Charlotte is a very happy, determined little girl who loves gymnastics and playing with her friends. She rarely complains about her health problems, and tries all the time to overcome the tiredness and aches and pains which arthritis brings.
“In June 2013 Charlotte had to sit on the side-lines at sports day as she could barely walk. By June 2014 she was back on form and winning medals at sports day; she came third in the 50m final! In May 2015 she climbed all 704 steps of the Eiffel Tower!”

Adam makes Black belt

Written by Lee Ashman, Adam’s dad

“This is my 10 year old son Adam Ashman, he was diagnosed with JIA at aged 7. He’s had some tough times but has come through it and responded well to treatment. About 4-6 months after starting his treatment Adam took up freestyle martial arts at a local club as we thought this might help strengthen his joints and help with his flexibility. Saturday the 4th of July, Adam took his black belt grading and we are pleased to say he passed so he is now a 1st Dan black belt in freestyle martial arts! Needless to say the whole family are immensely proud of him.”

Our Story...

By Sarah-Louise Frost

“It first became apparent there was a problem when my daughter Amber began to crawl at 6 months. l began to notice that she seemed to favour one of her legs, and then when she tried to walk we would notice that one of her legs was dragging, this went on intermittently for a few months until after weeks of worry l took her to hospital when her knee swelled up one night.

“Our local hospital immediately diagnosed her with a fractured knee and so began months of x-rays, puzzled looks from doctors and questions about my care for Amber from health visitors. After 3 more months of agony, which by this time when she woke in the morning her leg would be bent up and stay that way for most of the day, l left my job to care for her full time as the child minder l had employed could not care for her as she was. Eventually a doctor at the local hospital referred her to Great Ormond Street.

“It was there that they finally diagnosed her with JIA. Ripples of shock whet round the family…how? why? surely that is only for old people? We had endless questions and were looking for explanations.

“When Amber was 18 months she had the first of what was to be yearly and sometimes twice yearly experience of Cortisone injections under general aesthetic.

“My daughter whet from not being able to walk at all on her left leg to being cured over night! It felt like a miracle. My naivety thought that it would all be over by now, but 9 months later it returned and this time worse and now in her right knee. The JIA has systematically worked its way through all her lower limbs (ankles,knees,hips) and now her wrists and fingers over the last 6 years.

“As well as JIA Amber is Hypermobile in her finger joints, and has deviation of the joints in her hands. She also wears shoe raises to help correct a difference in the length of her legs.

“After 7 rounds of Cortisone injections she was referred for weekly Methotrexate injections. This means we go to hospital once a week for injections and blood tests. As with anything the side effects mean my 7 year old is slight for her age and can make her feel sick from the treatment, but I do feel the treatment has helped. Before she would limp and have problems with her hand joints every morning, and also missed a lot of P.E and other activities at school.

“Sometimes my daughter says ‘why me mum’ or ‘please can we just not go this week’ but I have to explain to her without these medications her condition may mean missing out on the things she loves.

“I am lucky to have a bright little girl who really does not let this condition affect her as much as it could. People find it hard to understand and on days she is not having a ‘flare’ say ‘but she seems fine’ and some look at me like I am the one with the problem. But they don’t see the other side. But as any parent with a child with JIA will know the problems don’t stop with just joint problems.

“But thanks to the great team at Great Ormond Street Hospital, occupational therapy treatment and aids that are available to help her get on with things as independently as she can, we are living with it and making the most of the up times and all pull together for the not so good times.

“It is only recently l have got in touch with other parents going through the same and l would urge any parent struggling alone to reach out in the forms of forums/groups/twitter of some heartfelt support from parents, carers and patients in the same situation.

“I cope myself by focusing on how fortunate we are that it is not a life threatening condition and am going to be running to raise money in 2012 for charities relating to JIA.”

The CCAA would like to thank Sarah-Louise and Amber for sharing their story with us.

MY LILY

Written by Lily’s mum…

“Lily is 8yrs of age , and to look at her you would think she is a normal healthy child.

“However, Lily has Juvenile Arthritis and started with it when she was just 16 months of age . She did go into remission but 3 years ago but it came back, not just affecting her joints but her eyes also, with a condition called Uveitis; a condition that could make Lily go blind .

“Then Lily started with her joints flaring again not long after. Lily is on weekly injections and monthly infusions making her immune suppressed plus joint injections . So not only do you have the worry of the disease itself , there is the medication and its side effects, plus with her weakened immune system making her more susceptible to catching other illnesses and infections which are very serious and could be potentially fatal.

“This has had alot of strain on our family over the years as its very worrying and its like being on a rollercoaster sometimes . We spend many hours at the hospital having treatments and appointments and juggling school and work commitments it is very stressful and hard.

“You do feel all alone as a parent as no one really understands what we as parents deal with day to day plus it isnt a disease people know alot about . Its hard for Lily aswell as she is the one who has this disease afterall and has to have all the medication; its alot for a chid to deal with.

“This is why charities like the CCAA help parents and children like my Lily by giving us support and to show we are not on our own and there is help and support out there.”

Lily’s second cousin, Matthew, is running the Sheffield Half Marathon on the 12th May to raise funds for Childrens Chronic Arthritis Association. Please show your support for him by donating anything you can spare

Family life adapts when you discover your child has JIA.

By Caroline & Tony Cox

“When our daughter was finally diagnosed as having JIA we were initially relieved as many months had been spent visiting doctors, consultants and hospitals. Soon our feelings changed when we realised that this disease was not something that could simply be treated and cured. ‘Why did it happen to her and not to our other children? I wondered if I could have done anything to prevent her from developing it. Should I have done anything different when she was a baby? All sorts of feelings of guilt and disbelief went through my mind.

“You ask yourself what does all this mean?, what does the future hold?, how will this affect the family?, what changes need to be made?, how can we find out more information about this dreadful disease?, what do we need to be aware of?, Is there a cure?, what are the limits of medication?, can we stop the pain?, can we limit the damage? and so it goes on. There are so many questions that spring to mind. Initially you are not sure which way to turn. You are desperate for help and support.

“Time passes on and you start to get a real understanding of how devastating this disease can be, not only for the child, but for the parents. In the main, the day-to-day management of the child falls on the mother, but the effects on the father are sadly unappreciated, particularly if they are reluctant to show their emotions. Trying to juggle the day-to-day running of a home with fitting in the programme of exercises, trips to doctors, hospitals and hydrotherapy sessions is far from easy. I can remember initially thinking, ‘how on earth will I fit everything in?’, but the realisation that our daughter had to come through all this spurred me on. I felt that I was doing something positive to help her. I know that many times we both felt frustrated and very isolated. There is no doubt that the whole family is affected in some way, from the brothers and sisters to the mother and father, from the grandparents to the aunts and uncles. We also found that some friends no longer included us. I am sure it was because they did not know how to cope with our daughter’s illness, and felt guilty.

“The added pressure on the family can be quite disruptive, and can have many effects on the day-to-day running of the family unit. Even a simple day out needs to be planned and may even have to be cancelled at the last minute because your child is unwell. The unpredictable nature of the disease is very difficult at times and causes a lot of problems. It can bring families closer together, but also can unfortunately have the opposite effect, where the pressures and responsibilities become too much.”

What are the good things that can come out of it ?

“A real appreciation of how fortunate we are to be in good health. An understanding of the problems that children experience with this illness. Knowing how we can help them through the bad days and enjoy the good days — and there are some. Our other children have a greater appreciation and understanding of children who are less fortunate than they are. The great character that comes through each child that suffers from JIA. The courage and commitment that they show.

“Many children with JIA ask the question ‘Why me?’ This is a very hard one to answer.

“No matter what happens you cannot bury your head in the sand, it is not going to go away. Make the best of the good times.”

Arthritis isn’t you, it’s just a part of you. As long as you keep smiling it hasn’t beat you.

By Charlotte Stacey

“The three words at diagnosis flipped my world upside down. “You have Arthritis” isn’t something I was expecting to hear at the age of 16. But at least I knew why I’d been in so much pain for so long and so fatigued all the time and it explained the swelling at my joints. Not once did it cross my mind that I had a serious illness though.

“Living with arthritis is an up and down process. You never know when you’re going to be feeling good or when you’re going to be feeling rubbish! One day you’ll be running around a football pitch the next you’ll be in bed with a swollen knee crying in agony. Not only is it physically draining and painful, it’s also mentally difficult. I didn’t want to accept being ill, which resulted in me getting pretty depressed and at the same time I was carrying a cloud of guilt over my head because I didn’t feel I had the right to be sad when there was so much worse going on – wrong. You are entitled to feel as sad as you want, this is your problem and you can deal with it however you please. If you want to cry, cry a river – it does not make you weak. But please, if you feel any worse – tell someone, there is so much support for you and remember you’re not alone, meet others like yourself and allow the feelings of isolation to be lifted.

“Daily activities can be a struggle, this can lead to frustration. Not being able to open the lid on the bottle or even wash your hair in the shower. Simple things we once took for granted. The fact that you have to plan everything and then nothing even goes to plan anyway because of the unpredictability of the disease. The way no one understands how you’re feeling and the look of disbelief they give you when you explain what is actually wrong with you – I mean you look perfectly healthy on the outside, there’s no way that’s happening to you right?! – Wrong, just ignore the people like this and concentrate on the ones who support you, and if it seems like they’re having a bad day, just remember accepting it is just as hard for them as it is you. – But don’t give up and don’t be afraid to ask for help.

“It will get better – the worst part is diagnosis so if you can get through that, you can get through anything. The right treatment for you, will be found, even if it takes a little bit of time, so don’t worry, there is a light at the end of the tunnel.

“And finally, don’t bury your head in the sand. There is a whole world of information out there, so surf the internet, read the leaflets and ask your doctors. The information isn’t going to come to you so go look for it! Learn as much as you possibly can about your disease. And remember, arthritis isn’t you, it’s just a part of you. As long as you keep smiling it hasn’t beat you.”

The CCAA would like to thank Charlotte for sharing her story with us.

Charlottes Journey Blog – Charlotte also writes about her daily battle with the pain and other effects of arthritis in a blog. Its full of really great stuff and is well worth a regular read.

http://charlottesrajourney.blogspot.com

  • Canoeing at the CCAA weekend
  • Jazmin Scarlett tells her story about JIA

We are always looking for real stories to add to the ones we already have.

These stories truely help people to relate to and understand the difficulties of living with JIA, but most of all make people realise they are not alone.

If you would like to share your story with us please email us at info@ccaa.org.uk and we would be delighted to feature you on the website and social media.