Scleroderma has been likened to ‘having your body turned to stone.’ 

A little over two years ago, during the October half term back in 2020, I’d planned a much looked forward to catch up with my parents. We’d not seen much of each other that year of course and had arranged to meet at Lepe Country Park for a (Covid safe) beach walk and a hot chocolate by the sea. 

It was pretty chilly and blowing a hooley too but the Smalls (wave jumping) and the dog (chasing seagulls) were having a ball and all was fine until my Mum’s hands turned white and just wouldn’t/couldn’t regain colour, warmth or feeling. She was concerned and the tips of her fingers were becoming very painful. We suspected Raynaud’s, which we knew to be an unpleasant condition, but we had no idea of the road my Mum’s health was about to take. 

This initial Raynaud’s episode was soon followed by a myriad of other strange symptoms such as extreme reflux, breathlessness, racing heartbeat, pain and swelling across the whole body and internal shivering. Numerous GP and hospital visits began and eventually the words Scleroderma and Systemic Sclerosis (both linked to secondary Raynauds Disease) were used and finally my Mum’s diagnosis made.

Scleroderma is a rare and complex autoimmune disease and it’s fair to say that none of us really understood the implications. Mum now takes some serious amounts of medication to manage the symptoms and the associated loss of movement and pain including steroids, immune suppressants and chemotherapy drugs.

The condition has left her with damage to her heart, lungs and oesophagus, swelling and internal inflammation in her arms, legs and feet leading to restricted and painful movement and she is unable to use her hands properly; dressing herself, cooking, sewing, using her laptop or iphone are all daily tasks that now vary from being tricky to immensely difficult or extremely painful. 

I should think that Mum has lost count of the medical appointments in the last two years but, for the most part, the NHS have been outstanding and we have now hopefully reached a point where her condition has stabilised. We, of course, realise that things may change in the future and that sadly the not inconsiderable damage cannot be reversed but we feel so lucky to still have her here with us. 

Thanks to my fantastic Dad she is able to lead a fairly normal life at home, even managing to get out for her favourite walks again since taking some new heart medication, and, with careful planning, can still get out and about with family and friends. However, there have been many changes, compromises and concessions to life and without his round the clock care things might be very different. 

So here we are then, thanks for reading -  if you’ve got this far! I’ve never run a marathon before and, as I enter the last year of my forties, I thought it was high time I did something amazing in honour of my amazing Mamma. 

Please, if you can, support my London Marathon challenge to raise vital research funds for SRUK so that speedier diagnosis and more effective treatments might be discovered. 

SRUK says: 

People living with Scleroderma often experience a significant impact on their quality of life due to their painful and often debilitating symptoms. It can cause significant physical disability and is life threatening in some cases.