Personal Journeys - Sue

My mum Brenda was a member of your organisation and suffered from the cruel symptoms of Scleroderma for many years. After a long fight she died on February 28th 2010.

The illness and symptoms are exceptional and even her close family struggled to
understand the complexity of her condition, therefore we thought we might help raise
your profile and funds by asking for donations, rather than flowers, at her funeral.
We were overwhelmed by people's kindness and have enclosed cheques totalling
£780.00 which we hope will go some way to helping reduce suffering or finding a cure for this complex disease.

Since my mother died I have read your online newsletters and website with much interest. I confess that I was terrified to read it prior to her dying. It sounds cowardly now but I once read that the life expectancy was 10 years from diagnosis and that terrified me. I thought it might be informative and perhaps comforting for my mum's story to be published on your web site or in your newsletter. Maybe others would be inspired to raise funds by mentioning Scleroderma in their wills or funeral services.

Before my mum died we talked about how long she thought she may of have had her condition, I remember my first recollection; we were on a family holiday in Portugal and she suffered terribly with her stomach. We thought she must have picked up some sort of bug or food poisoning, she was 45 then and that was 23 years ago. It was some time later, after many tests, that she was diagnosed and started to receive treatment which came from Professor Denton, of whom she spoke highly. It is difficult to determine when she first had the condition, but on reflection, she recalled isolated instances, going back 35 years.

My mum worked most of her life in a factory producing huge inflatable devices, mostly for the military. This entailed using highly toxic substances. She was not supplied with protective equipment and spent most days with her hands covered in glue. My memory of visiting the factory as child was the overpowering smell of adhesives as there was little ventilation. She was convinced that this is how she became unwell (we will never really know) but never ever complained of it.

She mostly managed her condition herself and I wish I had written this before she had died so she could have listed all her ailments and how she overcame them. Mostly it affected her stomach and intestines, she was a small lady but had a vast swollen tummy all of the time. She once compared her intestines to the inner tube of a tyre, which had been pumped up too much with the bacteria lingering in the swollen areas. At times her stomach just stopped working and she would juggle her medication to get things moving again. She would have many good weeks without much complaint then she might have a couple of bad days when she would feel poorly. She attended my wedding in America without any concerns and some years later her grandson's wedding in Estonia. All her family just learnt to live with her condition on a day-to-day basis. In the later years she suffered with her heart and discovered it was twice its normal size which meant more medication and that she had to sit for awhile
when she developed palpitations.

Her face aged far beyond her years and her lips began to disappear, she was once self conscious of this but learnt to live with it. She would often remark how she loved it that her grandchildren didn't see any of this they just saw their Nanny.

Her Raynaud’s became more than just an inconvenience together with her extreme dry skin. I can't even begin to recall how many different pills she would take on a daily basis or regular hospital checkups that she had to attend. She found that the condition was so rare that many of the medical professionals she encountered had little or no knowledge of scleroderma.

She never let her symptoms stop her getting on with life and being independent. I never heard my mum complain. She was such a positive person and was extremely active and determined. I am convinced that it was this attitude that helped to her beat the illness for so long.

It was evident that she became frustrated but still maintained and developed a
huge beautiful garden. I would often find her up a tree with a chain saw in her hand or tending to her vast vegetable lot and chickens. She did all her own shopping and drove a quirky little car up until the Christmas before she died.

She was married for over 40 years and had 5 children and 3 grandchildren and even great grandchildren.

I did see her illness slow her down and her bad days had certainly increased but it was only in the last few months that it took hold with some acceleration. She was admitted to hospital twice in the last months of her life but prior to that had never been hospitalised for her condition.

Thank you for taking the time to read this letter. If you do publish any part of it, I would be grateful if you would provide a copy or link so that I may pass it onto the many people who supported us.

My mum was and is an inspiration to me and I hope her story inspires others. I have yet to meet such a determined, generous lady who always had time for her family and never complained of her poor health, she just got on with life the best she could.