Vital research

Hello fellow members, I seem to gain lots of comfort speaking to you all as you have been here from the start! Yesterday we were asked as a family if we would consent to skin and tissue being taken carefully from mum for vital research. The specialist that rang us was amazing and she was so so grateful when we agreed, it would definately have been something mum would have wanted, I truly hope they gain lots of vital information from mum being as she seemed to have a real strong wallop of the disease with everything being affected, I am sure mum will be helping so much even in her death. My tears are flowing well but of course having children that need to do homework and need feeding force the normality upon me! Any advice on how to help a grieving father missing the love of his life would be very gratefully received! Nikki. X

5 Replies

  • Thank you again for sharing with us. Just be a good listener when your dad wants to talk and you will find a way to help him through it.

  • Your decision to help with Scleroderma research through your mum's death is incredibly kind, and much appreciated by all those whose lives are affected by the disease. Thank you. With regard to supporting your father, all I can say is take each day as it comes and keep talking. Alison x

  • Thank you so much for allowing skin & tissue samples to be taken. I know from talking to researchers how very important this can be & there will be many scleroderma patients who would be grateful. It must be such a difficult time for you but you were obviously a wonderful support to your mum & I'm sure you will sense the way to help your father.It may just be enough that you are there to listen & share. With all sympathy & best wishes.

  • Thank you Nikki. Thank you to you and your family and especially your Mum. Just be there for your Dad. When my Mum died my Dad became a much bigger part of my family, we were all there for each other and it really helped. My children loved having him around and he played a huge part in their growing up. Just keep talking and remembering a very special lady.

  • I am a member of this site as a scleroderma sufferer, my mum passed away a few days ago and she had Lupus, Sjorgens and more, she donated her body to medical research and I am very proud of her. It has actually made some things easier as we have not had the stress of dealing with a funeral. We will organise a celebration of her life with friends at some point . Maybe the research will help us with our autoimmune diseases . Lets hope. In the meantime I empathise with you as dealing with the death of my mum is hard.


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