The Scleroderma Society

Are there any forum members in the Bournemouth area?

Hi everyone, it is a very difficult time at the moment,to say the least. Mum has been at the royal free in London for nearly 2 months now. Mum is currently on the acute renal ward, her kidneys have been failing, she has a chest infection and around 10 litres of fluid around her lungs, I thought I was saying goodbye for the last time on Christmas Day, somehow mum is fighting this, just yesterday we saw a tiny bit of mum back, the doctors are fantastic and said that they have not given up, there are small improvements but that we have not turned that all important corner yet. I cannot believe how skinny she has become, I can remember moisturising her extremely hard and raw legs,unbeknown to me, this was not just the hard stretched skin from the scleroderma but so so much fluid retention, I am still learning and am so confused at how quickly this disease has affected mums organs, in the space of 8 weeks she became critical, at first the hospital were unsure if mums kidneys were scleroderma or a separate issue,they do now believe it is all connected to the disease,mum is on dialysis nearly everyday but this is causing low blood pressure so it has to be so so carefully monitored,the antibiotics are of course taking a long time to work as I believe mum is on one drug for the scleroderma which is an ace inhibitor called quinapril and this reduces the effectiveness of the antibiotic. News from the hospital yesterday was that the antibiotics are just starting to kick in and mum is breathing better as well as her blood pressure stabilizing. I am trying not to get too excited as this has been a complete roller coaster and still is. If I were to be brave enough to think of mum coming home one day then I was also wandering if there are any of you close by to the bournemouth area that could one day meet up with mum and show her that systemic scleroderma can be managed. Is all of this a familiar story to anybody? X rays show that mum does not actually have any scarring on her organs which I think is good news?! Mums kidneys are being very naughty and I am sure once they find a happy balance with dialysis and medications we can kick this disease into shape! Any advice or reassurance would be great. Cannot praise the royal free enough. Thanks everyone for reading. Nikki. X

3 Replies

Oh Nikki, I've just read your post and I feel so sad for you and your mum that you're going through this terrible time. I don't live in the Bournemouth area but I just wanted to give you a virtual hug and sympathy. As you say, she's in good hands at the Royal Free but when she comes out I'm sure there are local scleroderma sufferers who can help. Keep going and don't give up hope. Alison x (mum to Jasmine who has systemic scleroderma)


Oh Nikki, how strong you are talking so rationally about your mum. She is around my age and puts my disabilities in the shade. I was put on Lisinopril for my kidneys and am 5/6 of the way through a course of Cyclophosphamide and methyl prednisolone and, although my condition is progressing still, I can manage a reasonable amount of quality of life. I am sorry but I too do not live in Bournemouth. Dorothy


If you go to and click on support groups a list of local support groups will be appear on a map . I duo or your mum were members of the society you will have received a list of members that are happy to be contacted by phone you may also find someone local to you via this route. Wishing your MUM better and thinking of you at this difficult time .