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Karen’s Story

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Watch my story

Meet Karen
Karen  is 49 years old and has two grown up children.  She lives close to her family in Ardrossan.

Karen was diagnosed with Lupus 19 years ago and was very ill at the time of diagnosis.  Lupus is an auto immune disease that mimics other conditions such as rheumatoid arthritis or MS.  It affects people in different ways and is a long term condition which requires careful monitoring and management.

It took Karen years of living with Lupus to learn and understand the diverse nature of her condition, and to start the process of self managing her life with Lupus.

In Karen’s case, she experienced severe multi organ involvement with extreme fatigue and joint pain.  As a mother of two young children, this was a time of great anxiety for the family.

At that time, doctors were less aware of Lupus than they are now.

Her Lupus is now under control and her symptoms are much less problematic than in the past.

I feel like I’m getting my life back.

Karen used to feel as if there really was a wolf within, as the name ‘Lupus’ suggests: it was a horrible feeling.

It’s taken me a long time to get here, but I’m very positive – I’ve got things that I want to do and I’m making a point of doing them.

What self management means for Karen
Karen joined Lupus UK and began to access up-to-date information on Lupus.  She found that sharing her experiences with other people helped her in the self management of her condition.

You’re getting true stories, you’re having a dialogue – you can ask that person questions about their experiences, and build up a relationship.

She has support from health professionals when she needs it and does not feel she is alone in self managing her condition.  However, in Karen’s experience, GP’s are not fully aware of Lupus and if they do not think of Lupus they will not diagnose it successfully.

Karen is the chair of The Strathclyde Lupus Group, a local branch of Lupus UK.  Because she believes that Lupus is not well understood by professionals, she is keen to do talks to students and professionals to help develop their awareness and understanding.

The group aims to deliver Lupus workshops to first year medical students at Glasgow University in conjunction with Dr M Field, Consultant Rheumatologist, so that they are aware of the condition from early in their career.

We feel that if Lupus is diagnosed early, people can be treated before serious organ damage is done.  To do that, doctors need to know about the condition.

The Strathclyde Lupus Group has received a grant for this project from the Scottish Government’s Self Management Fund, which is administered by the Long Term Conditions Alliance Scotland.

Karen feels that the key to self management is to know your condition and how it affects you.

Self management for me is when you’re in control of your condition, and basically in control of your life, able to make decisions and plans.

If you can spot the warning signs of a flare-up, you can take steps to deal with it, such as pacing yourself to avoid becoming over-tired or adjusting medication.

Karen’s message

  • Get to know your condition and how it affects you.
  • Accept that you’ve got your condition and that it will limit what you can do.  You can’t move on until you acknowledge this.
  • Recognise that you can get on with your life and that you really can do things – but with varying degrees of difficulty.
  • It is important to have an understanding of your medication, what it’s for, why you need it and what effect not taking it will have.

ALLIANCE Scotland - Health & Social Care Alliance Scotland