JUVENILE RHEUMATOID ARTHRITIS DIAGNOSED AT 10 YEARS OLD
NOT JUST OUR ELDERLY ARE AT RISK
Just imagine this scenario, you wake up hearing you ten your old daughter calling out, no crying out to you in terrible and excrutiating pain, so bad that she cannot move. She can't move her legs because all of her joints are swollen and stiff. She is very frightened, as are you , because you do not know what is wrong with her. She had been fine only yesterday, when she had been playing outside with her friends. Now, to your sheer horror, she is completely immobile.
Well, this is a true story. This little girl , is the daughter of a friend of mine, and her mother , I shall call her Jane, for privacy purposes, found her like this one morning. She rushed her to her local GP, whom they had been seeing since she was a baby. She referred her to the big city Hospital, as they lived in the country, they had to travel quite a bit to get there. Expecting to find out straight away what was wrong with her daughter, Jane was disheartened when she asked the Doctor (Paediatrician) what was wrong with her daughter, and he replied "I do not know at this stage, I am sorry but I do not know what is wrong with your daughter:" We will have to do more tests. The poor little girl had already been through so many , and now he was saying to Jane, they needed to do more tests.
They sent her to a big Children's Hospital, that finally made a diagnosis after she had been a patient there for over a week. My poor friend Jane, was both scared and confused at what might be going on with her little girl, to cause her to be in so much pain and distress. The Head Paediatrician eventually told Jane that her daughter was suffering from a condition called Juvenile Rheumatoid Arthritis.
Juvenile Rheumatoid Arthritis
This Children's Disease was previously known as "Still's Disease, usually starts before the age of 16 years. It is estimated that it would affect 7 out of every 100,000 worldwide per year. In actual fact, there are three forms of Juvenile Arthritis, and inflammation of the joints is a common feature in all of these.
Treatment usually consists of rest, physiotherapy and anti-inflammatory medications, this is given together with regular attention to the eyes (in girls, more than boys, some children with this disease, develop potentially serious eye inflammation.) Some of the drugs that are used to treat adults with arthritis are sometimes used and are effective.
These treatments can go on for a very long time, making it extremely hard and stressful on the children concerned and their families. Although there is a lot of emphasis placed on the physical treatment of the child, their intellectual, social and physiological development should also be taken into consideration.
There is good news though, about this disease, and that is that it is much less likely to cause permanent damage than the adult version of the disease. Although some children can be left with deformities as a result of the interference with their normal growth pattern, it is good to know that 70% of the children with this disease, do make a good recovery. Now, isn't that good news, especially when it is such a nasty thing for these little ones to get.
After getting over the the shock of being told her daughter Amanda had a terrible disease, Jane started to concentrate on what was important here, here daughter. She was started on medication to reduce the swelling in her joints and it allowed her to walk once again. Jane was told that this disease ranks as being among he top three most common chronic childhood diseases. In both children and adults alike, rheumatoid arthritis causes a lot of pain, stiffness and swelling in or or more of your joints for very long periods of time. It can cause restricted mobility and often it can cause deformity. Jane's daughter's legs were starting to show signs of her legs bowing out a bit. You could tell just by looking at her that they were not looking like a normal pair of legs, due to the swelling.
Even though Janes daughter Amanda, is older now, she is still affected by her arthritis but in time she has learned how to manage it. She has diligently taken her medication every day since she was diagnosed . I can remember going over to their place and she would say "I am taking my medication now Aunty Pam". She finds that the joints in her hands and her jaw are the most bothersome. She told me that she finds that for a few weeks every couple of months, her arthritis is" the pits" to quote her. She said it flares up so badly causing her pain and stiffness all over her body. She said that the flare ups have been increasing in intensity over the last couple of years. I asked had she told her Specialist yet, to this she replied."Oh yes, Aunty Pam, I can spot the warning signs these days and I tell my Doctor as soon as I think something is out of wack, a favourite expression of hers. When I do that she told me he can modify her medication, which is good .
As there is still no cure for Arthritis, She has to just cope with it and try and manage to live the best life that she can. She is lucky that she was diagnosed at an early age, Jane was told, as this can usually stop any permanent damage. She keeps up regular exercise because this helps strengthen her muscles and maintains her range of motions of her joints. She works in a communications company and takes courses online that teaches her strategies to help her to deal with her arthritis. She swears by it, says "this has done me the world of good". She manages her arthritis with a combination of medication and daily exercises, including walking and pilates. I must say I am impressed with the way she handles this so intelligently and grown up.
AMANDAS DREAM FOR LIFE
As I said earlier, Amanda works for a Communications Company and manages her arthritis quite well herself. When she finishes work each day her joints in her legs are usually stiff and sore. She has an old chesterfield couch she told me about, and she is tempted to lie down, get herself comfortable and watch the television.
She had however a bigger ambition motivating her the last time we spoke, which was a little while ago now. She was in training to fulill her life-long goal of participating in a Marathon. Can you imagaine it, this 23rd year old woman, who has been stricken with this terrible disease, Juvenile Rheumatoid Arthritis She is an inspiration to all those who have this and any other horrible diseases.
To Prepare herself for this, Amanda walked thirty to ninety minutes, five days a week. She is member of the Arthritis Society's Joints in Motion Marathon Training Team, and she had planned to walk a full forty-two km Marathon . Ironically, when I asked her why she had joined Joints in Motion team, she laughed and said to me , "You know what Aunty Pam, I am dreaming of a cure for arthritis", she said to me with a sheepish grin upon her face. She continued with "I know that the money raised by the team funds research that me and others like you, benefit from every day, research that makes it possible for me to be able to live my life the way I want to". I gave her a big hug, and said "good for you Mandy, you'll show them, you really will, and you will be remembered for this for years to come".
My only regret is that she lives in another country now and I don't get to see her, but she keeps in touch when she can. She is still training for that Marathon, and with her determination and tenacity, that shows through so much with everything she does, I have every confidence in her that she will pull this off as well.
Unfortunately, for the sufferers of this terrible affliction, Juvenile Rheumatoid Arthritis, there still is no cure. Patients need to be informed of everything there is to know about this disease and be aware of all the therapies that are available to them. They can then make their own informed decisions in consultation with their own Health Care Professionals.