Hypermobility Syndrome

This week Imogen has been diagnosed with hypermobility syndrome.

Joint hypermobility means some or all of a person's joints have an unusually large range of movement.

People with hypermobility are particularly supple and able to move their limbs into positions others find impossible.

Many people with hypermobile joints do not have any problems or need treatment. However, joint hypermobility can sometimes cause unpleasant symptoms, such as:

• joint pain
• back pain
• dislocated joints – when the joint comes out if its correct position 
• soft tissue injuries, such as tenosynovitis(inflammation of the protective sheath around a tendon)

If hypermobility causes these types of symptoms it is often called joint hypermobility syndrome. Read more about thesymptoms of joint hypermobility.

Living with joint hypermobility syndrome

Joint hypermobility syndrome can be very difficult to live with because it can cause fatigue (extreme tiredness) and long-term pain. It may also take time to receive the correct diagnosis due to the wide range of symptoms that joint hypermobility syndrome can cause.

However, once diagnosed, joint hypermobility syndrome can be treated using a combination of exercise andphysiotherapy (where physical methods are used to promote healing). An exercise programme to improve fitness and muscle strength may also be effective at reducing pain. Read more about treating joint hypermobility.

The nature of joint hypermobility syndrome means that you are at increased risk of injuries, such as dislocations and soft tissue injuries. Managing joint hypermobility syndrome may therefore involve treating short-term injuries as they arise, while following a long-term treatment plan to manage daily symptoms. 

Causes of joint hypermobility

Joint hypermobility is often hereditary (runs in families). One of the main causes of joint hypermobility is thought to be genetically-determined changes to a type of protein called collagen.

Collagen is found throughout the body – for example, in skin and ligaments (the tough bands that link two bones together at a joint).

If collagen is weaker than it should be, tissues in the body will be fragile. This can make ligaments and joints particularly loose and stretchy. As a result, the joints can extend further than usual.

Most cases of joint hypermobility are thought to be linked toEhlers-Danlos syndrome hypermobility type, which is a group of inherited conditions that affect collagen proteins in the body.

Occasionally, joint hypermobility may be part of a rare and more serious condition such as:

• osteogenesis imperfecta – a condition that affects the bones
• Marfan syndrome – a condition that affects the blood vessels, eyes and skeleton
• Ehlers-Danlos syndrome vascular type – a condition that can cause the arteries, bowel or womb (in pregnant women) to rupture (split)

Read more about the causes of joint hypermobility.

How common is joint hypermobility?

It is not clear how many people in the UK have joint hypermobility. There are estimates that up to 3 in 10 people may be affected to some degree. It affects women more than men, possibly because female hormones increase flexibility.

Joint hypermobility is common in children. Children with joint hypermobility can bend into unusual positions (often referred to as ‘double-jointed’).

In many children, the joints become stiffer by the time they reach adulthood, although in some people, joint hypermobility and its associated symptoms continue into adult life.

Marfan syndrome affects around 1 in 5,000 people.

Update

Well the Enbrel and MTX mix seems to be working for Imogen at the moment. There is very little active arthritis in her joints though her right ankle is still being difficult.

She is getting on better with the injections now as well. We do Enbrel on a Saturday morning and MTX on a Sunday morning. We did try to do them both on the same day, but it was too stressful for everyone that way!

Imogen in herself is much happier, although she still tires very easily and complains of pain fairly regularly. We always have naproxen on standby just in case.

She amazes me with the way she copes with this disease, she doesn't let anything stop her, and she very rarely has days where she doesn't move from the sofa any more!

So all in all things are going well. We just need to get this ankle to behave and then we should have things under control!

1 Year On

It's a year today since Imogen was diagnosed.

This past year has flown by in a blur of hospital appointments, blood tests and numerous injections at home. I can't quite believe we're a year down the line!

I still remember how I felt a year ago, having no idea of what lay ahead of us, wondering where we went from diagnosis.

So Imogen still isn't in remission, although she is much better than last year!

We have done methotrexate since April, we've done oral and iv steroids, eye tests, physio appointments, xrays and orthotics.

This year we have started Enbrel and we are hoping that this will be our wonder drug.

Hopefully this time next year we will be able to say that Imogen is totally in remission!

On the Radio at Breakfast :)

http://www.964eagle.co.uk/news/local-news/1180258/video-a-three-year-olds-arthritis-journey/

Our Radio Bit

Ooh a quiet few minutes!

Well, Imogen is going to be starting Enbrel in the near future. Hopefully in the next week or so! This drug can take 4-6 weeks to work effectively, but she will be taking it alongside MTX for the moment.

Physio would like to cast her foot again. She was in casts for a week previously, but she then went into flare again so they weren't as effective as hoped. It will only be one leg this time, but for two weeks rather than one!

We did some filming with local radio station 96.4 The Eagle on Monday. That will be going out on their breakfast show tomorrow morning which is quite exciting!!!

We have eye tests at the end of the month. Imogen is thankfully getting better as time goes on with these. Hopefully again we'll get a clear result and then not have another for three months.

After that appointment, I actually have nothing in the diary for the whole of Feb!!! Which is amazing, although it will change and we'll have at least one.

On the 6th Feb, it will be a year to the day that Imogen was diagnosed! Where has that gone? It seems mad. I remember that day as though it was yesterday! We've been through so much this last year, and become a stronger family unit for it. I never thought I'd be doing injections weekly and it seeming the most normal thing! Hospitals seem like our second home, and we know most of the nurses at our local hospital by name!


XX

Raising Awareness

So, last year:

• I was a Social Media Champion for Arthritis Research UK
• Imogen and I appeared on Daybreak during National Arthritis Week
• I did a radio interview for BBC Sussex and Surrey for National Arthritis Week too

This year I want to do even more!

So far I have done some filming for local radio station 96.4 Eagle. As soon as it's available I will post a link.

I have also been approached by NRAS to become part of their Parent Panel when they revamp in the summer.

Exciting things are afoot this year already!!!

The Reason for the Forum

• 
  
• My daughter Imogen was diagnosed with Polyarticular Juvenile Idiopathic Arthritis in Feb this year. She wasn't even three years old.

  I remember feeling so alone after diagnosis. I didn't know anyone else who had a child with this disease and we were literally just given a diagnosis and shoved out of the door by the local hospital. One of the first things I did when we were settled at home was Google, to see if there was anything out there for parents with children who have arthritis and other than places who gave lots of information, there wasn't much where I could discuss things with other people going through the same things.

  I have talked to a few arthritis parents since and everyone has said the same. There are no real places to go to talk to others in the same situation.

  So the idea of Our Arthritis Journey was born. I believe there is a real need for somewhere to share our experiences, get advice and support if we need it, and also somewhere for the younger sufferers to have somewhere to chat and talk to others like themselves.

  I have been on many forums throughout my life dealing with many different things. I decided that having a forum would be a good place to start. That way people could join, see that they weren't alone and that there were many other people going through the same thing.

  The forum opened yesterday (16.12.13) and we have 5 members so far. Eventually I would love this to expand and be a great community for people to come and discuss anything, from the weather where they are, to the next step in treatments for their child. Also it doesn't just have to be for parents, it can be for grandparents, aunts, uncles, siblings or anyone else affected by the bombshell that is JIA. Because the one thing we all know is that JIA does not just affect the child, it has a knock on effect for the whole family.

  http://ourarthritisjourney.proboards.com/ http://imogensarthritisjour.wix.com/ourarthritisjourney