This month I have been asked by a lovely Lady Holly who I met on Twitter to guest post on her blog.
What I would like to talk about is JIA or Juvenile idiopathic arthritis.
This medical auto immune Disease can be described as:
Juvenile – means that the arthritis began before the patient was 16 years old.
Idiopathic means that the cause is unknown.
Arthritis – means one or more joints are inflamed.
Arthritis is not an old persons disease. They type of arthritis people get as they are aging is called osteo arthritis this is where the bones are thinning and starting to wear against each other. There has bee some campaigning through out the world to rename one or the other as the cause of each illness really do not have any links to each other.
The Girl (now aged 10) has suffered from JIA for the past 3 years.
The Girl (now aged 10) has had JIA for 3 years: She also has hypermobiliy (which used to be known as double jointed). It has a great effect on her everyday activities and cause much pain and frustration. Its not a fun illness to have at any age. Constant pain, joint stiffness, tiredness, frustration because you don’t understand why you are different, bullying from other children because you can;t walk and then next day you are running around like them. A disease without a cure.
Hospital admissions, daily meds check up with JIA Consultants, eye consultant (looking for a condition that can turn you blind if not caught) daily physio at home, JIA nurses, physios, orthopedic surgeons because the JIA has caused damage in your knee and its looking like joints are growing at different paces. If the slow growth leg does catch up a big op to make the bone longer, drugs that drop your immune system, powerful drugs, chemo drugs all for a ‘normal’ when you are a child with JIA.
This should not be normal for any child.
Like all JIA patients She has regular physio appointments and exercise that can take 30 to 45 minutes each day. Try explaining to a 10 year old why they can’t go out and play with their friends because they need to do these unpleasant exercises.
It’s so heart breaking seeing her in pain. It’s hard to explain to someone that she gets up each morning and is so stiff she can’t bend her legs but in order for the stiffness to go she must. There are tears most of the time.
There are lots of blood tests to be had.
Then there are constant meds, every day without fail and then treatments under general anesthetics:
JIA can also effect eyes as well as other organs so we have 3 monthly eyes checks at the hospital.
Then there is the tiredness from daily activities. A day at school can mean an hours sleep when you get home and usually with her friend Squeaky close by:
Help us (The Boy, The Girl & I) to raise awareness and funds in order to find a cure.
We are in the planning stage of a fund raiser a real fun activity which Freya can participate in with little join stress. Proposed date is 25 May (Sunday of Whitson Bank Holiday). It may have to move back until the summer holidays I feel there is going to be some read tape in front of us.
Thank you so much to those who have already donated. I will be setting up a page when we know that we can do what we would like to do (the red tape bit)
As a sufferer of Rheumatoid Arthritis, I understand the pain and frustration encountered on a daily basis as a result of this incurable disease, A of of people just think arthritis is wear and tear on joints due to old age and don’t even realise children can have this illness too. Rheumatoid arthritis is nothing to do with old age. It is your own body fighting itself. Your body thinks your joints are an alien body and goes in to survial mode attaching the joints.
You have done nothing wrong to get it. You got dealt a different challenge in life. JIA and RA are invisible diseases, people struggle with this concept of seeing no physical illness and can be so unkind. The Girl has been at the end of a lot of remarks such as she is making it up or putting it on to get out of doing something she doesn’t want to do. Nobody should have to deal with such behaviour from others.
Lets try together to find a cure and help bring my happy beautiful, smiling, precious girl back to me.
I would really appreciate it if you could spread the word about JIA and RA and if able donate on my just giving page where I am hoping to raise £100 for Arthritis Research UK as part of my 50 by 50 bucket list.
More information about JIA and RA can be found here.
Please share this to help raise awareness. Thank you for reading.