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Sophia’s Story – Brief Encounters of the Lupus Kind

Sophia Brown - Sadly passed away May 2012

Brief Encounters of the Lupus Kind – Sophia’s Story (2009)

1989.That’s the year everything changed. The year a seven year old was forced to growThe year I was diagnosed with Lupus.  This is my experience of the disease people have begun to fear but do not know enough about.

My name is Sophia Brown and I was recently evicted from the Big Brother house.  I’m just a normal girl with a normal life, but would never have thought I have so much in common with the King of Pop, Michael Jackson (may God rest his soul)!  Having had Lupus from such a young age, I’ve learnt to manage it now rather than just ‘live with it’.  As a result, life isn’t half bad!

My signs of the disease were not as straight forward as most.  At least that’s what I was told.  But maybe it’s because they didn’t know what they were looking for.  I had the blister rashes, aches and pains etc and was generally unwell, which was clearly visible.  However, the GPs were convinced it was only a virus and told my mother all I needed was TLC (Tender Loving Care).  Showing no signs of disappearing, my health got worse on a daily scale.  Constant fevers, vomiting, disorientation, mouth ulcers until I couldn’t even stand by myself as I had become so frail.

As you can imagine, and as any mother would, she went against what the many GPs had advised and took me to the hospital, where they prodded as poked until after at least a month, they discovered I had Lupus.  This was just before they were about to start treating me for Cancer, by the way!  They had stated that they had not looked at that being a possibility as it was extremely uncommon in children.  Due to the delay in my diagnosis, I had become too unwell for King’s College Hospital so they arranged for me to urgently be transferred to Great Ormond Street Hospital – a transfer they didn’t think I’d stay alive for as my blood pressure had risen to around 280/210, they later revealed.

So fast forwarding a few years, after living on various medications and IV drips, putting on a lot of weight etc, it was later discovered that my sister too had Lupus.  Nobody was sure how this occurred as she had previously been tested and was fine.  She, after many years, lost her battle with the disease.  It was unveiled after her death and many years of research that it had been passed from me to her, like a cold virus.  The only difference being that it can only be passed to someone with the exact same genetic make up as me.  In other words, if she had been my half sister, she would’ve been fine.  Doesn’t make me feel the greatest though.

All of this happened by the age of 23.  Not forgetting the usual dramas everyone goes through, such as puberty when I also had another vicious attack from which the doctors thought I’d die in my sleep.  If you add bullying, stretch marks, a miscarriage, Vitiligo, near suicide attempts and more teenage drama to the mix, to say I’ve had an eventful childhood would be an understatement.  However, to know that all of this has not been in vain and that I now have a chance to tell my story and increase the awareness of Lupus makes it all worthwhile.

Lupus is like a relationship.  You learn to have a mutual understanding and respect.  If something I’m doing is ‘out of line’, my Lupus will let me know and I will make it right.  If I choose to ignore it, I cannot blame it for responding in a negative manner, just like any other relationship in life.  However, once this is embraced, you can then begin to manage it into your everyday life.  Despite what you may have heard, you do not have to live on drugs all of your life to survive as I haven’t been on any medication for about 10 years.  You just need to be aware of how your body works and the possible triggers that are likely to kick start it.  Discover these and you discover a better and more fun way of life.  You can actually begin to live rather than exist, which is what I’ve chosen to do.  I hope you do too…

Professor David D’Cruz said:

“This is a very sad story and our heartfelt condolences go out to all her family.

This story illustrates the genetic risks that underlie lupus  and there are over 100 genes that are linked to the development of lupus. There are many studies of twins and lupus and what is remarkable is that when identical twins are studied, in only a small proportion do both twins have the disease. The vast majority of patients, including twins, do not have any other members of their family with lupus but there are a small number of families where lupus can arise in several family members. This tells us that while certain genes do contribute to developing  lupus this is not the whole story.

Another theory is that an environmental factor or an infection could trigger lupus and a virus called Epstein-Barr virus has been suggested as a cause especially in lupus that starts in childhood. However, this is a very common virus and it has not definitively been shown to cause all types of lupus. It is not possible to ‘catch’ lupus from other patients or family members as this is not a contagious disease.

There is intense research being conducted all over the world to find the cause of lupus and it is clear that there is not a single cause of this disease – rather that many factors may be responsible.  However, great progress is being made into new treatments which are looking very promising”.