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Posts Tagged ‘Awareness’

I know at times I am, and never more so than when I started to look into things more for writing the Still’s Disease section of this blog.   It seems that I’m not the only one either, as a brief exchange between tweeters proved earlier today, prompting me to write this.

The main issue seems to be a confusion around its relationship to other conditions. Questions that arose were:

  • Is Still’s disease the same as JIA?
  • If you are diagnosed with Still’s Disease as a child, does this diagnosis change to RA in adulthood?
  • Is there a difference between Still’s Disease in adults and children?

I can try and answer, but as always I am using only my own knowledge / resources and obviously, I’m not a doctor.

Still’s Disease seems to be interchangeable with the term Systemic Juvenile Idiopathic Arthritis and it’s true that it was first described in children.  However, it is not simply a juvenile form of RA, the systemic features can often be more apparent than the joint issues. I know this is often the case for me – Mainly, I have fevers that peak at various times of the day, a rash that thankfully comes and goes (I’ve posted a couple of pictures here), enlarged glands, enlarged spleen and liver, tachycardia, the dreaded sore throat and swallowing problems, episodes of Pericarditis and then the funky bloodwork. I’ve also experienced degrees of Liver and Kidney damage in the past, although thankfully it has all been reversible. 

These things usually appear first in each flare-up and then the joint issues follow alongside, often quite acutely, but not everyone is the same.  There have been times when I’ve had to be admitted into hospital purely for the systemic symptoms, without any obvious joint involvement; on the other hand, I had surgery on my right shoulder when I was otherwise well.

So if a child presents with such striking systemic symptoms alongside joint pain and swelling, they are likely to be given a diagnosis of Still’s Disease or Systemic Juvenile Idiopathic Arthritis.  If an adult were to present with these symptoms, they would receive a diagnosis of Adult-Onset Still’s Disease; this is where the term sJIA becomes redundant (Adult-Onset Systemic Juvenile Idiopathic Athritis anyone?) and why I think we should stick to the term Still’s Disease. 

Similarly, a child with Still’s Disease can grow into an adult with Still’s Disease, with the symptoms remaining the same.  Perhaps for some, the systemic symptoms subside and their diagnosis is changed to Rheumatoid Arthritis, but in my own experience the diagnosis has stuck.  My Rheumatologist also makes a distinction between Still’s Disease and Rheumatoid Arthritis and their similar, but separate, treatment. For example, Anakinra is a drug no longer prescribed for RA but has proven to be particularly successful in the treatment of Still’s Disease, and, when recently discussing the success rate of my current treatment Orencia (73% improvement for people with RA), I was reminded that this did not apply to me directly as a Still’s patient. 

Although part of the same family of disease and sharing many symptoms, the two are separate – the best way I can describe it is similar to the difference between Lupus and RA.  Unfortunately (for us at least), Still’s Disease is not widely known like Lupus and even people who recognise terms such as JIA, RA, sJRA and so forth, may not understand the distinction and/or similarities between those and Still’s Disease.  This makes it very hard to try and get information and support as someone who is newly diagnosed, and for the rest of us to try and raise a bit of awareness.

Perhaps we need to stop the interchangeable name and stick to one recognisable term to clarify things and reduce confusion?

L

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It’s about two months now since I started this blog and to be honest, I’m still trying to find my voice and post in a way that is useful to others, not just self-indulgent.  It’s taking a while to get used to talking about myself, but I guess sometimes another person’s experiences can be as informative as an article and I hope I get the balance right.

My main intention has always been to provide information for people with Still’s Disease, especially those in the UK, since there isn’t an awful lot of information/support out there and this can leave the newly diagnosed feeling isolated. Many people that I have talked with have commented that the Foundation just didn’t accommodate their needs and so my goal is to eventually get an actual UK site up and running. Of course, this is all a learning curve for techno-shy me so I have to take things one step at a time.

I did take a step in the right direction today though, when Arthritis Care added this blog to their Community index.

Thanks guys 🙂

L

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I thought this was worth mentioning here since Still’s Disease was originally thought to be a form of Juvenile Arthritis – I know that I was affected as a child and that things may have been different if there hadn’t been such denial surrounding children and arthritis.

I was also alerted to this inspirational story about Kristy McPherson, an American golfer who has had much success despite being diagnosed with Still’s Disease as a child.

So spread the word, Children can get Arthritis too.

L

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