my sister has just died of scleroderma so sad to watch a great woman go never complained she had not had any hospital treatment

[sean1]

please tell me she has not felt much pain

[Monika]

I am so sorry to hear your very sad news and my thoughts and prayers are with you and the family at this time of grieving. Lots of love xxxx

[smiler2012]

Hello sean1,I am so sorry for the loss of your sister.Scleroderma affects everyone differently therefore it is not possible to answer your question honestly.

It appears your sister was a very brave lady and I hope you are able to take comfort in the fact that she is now free from any pain she may have experienced.

When you feel you can talk to someone her GP may be able to give you some answers to help you understand a little more.

My thoughts are with you and your loved ones.Take care xx

[zenabb]

You say that your sister died of scleroderma, yet you also say that she had not had any hospital treatment. How do you know it was scleroderma? I am asking you this question because it is important to us on this website.

I am very sorry that your sister died and I send you my heartfelt sympathy.

[Madge51]

I too was saddened to hear your news & shocked to hear that she not received any hospital treatment. I struck terror in me because I was diagnosed 7 months ago & still have had no treatment. This is due to NHS failures shortages& huge waiting lists.

If you could give us a bit more background it may allay the fears of other sufferers on this site. Thank you

Marie (Glasgow)

[AHM42]

So sorry to hear your sad news. As Welfare Officer (previously Founder and CEO) of the Raynaud's & Scleroderma Association I know only too well what relatives go through and I have lost many close friends myself through scleroderma. I have had the condition for over 35 years and would be happy to talk to you as I do think it helps to talk to someone who understands. If you would like me to call you please ring the office in 01270 872776 and leave your phone number with a convenient time for me to call you. In the meantime please accept my sincere condolences.

Kind regards

AHM

[sylrome in reply to AHM42]

Hello AHM42, I was reading your replay for Sean1 that he lost his sister from scleroderma, my sincere condolences to him and family. I am a scleroderma sufferer too for 22 years, I am interested how you deal with it and the medications that you are taking, if you please, I live in El Paso, Tx, near the border and all my treatments are from there. Can you write me to my email [e-mail]. Regards, Sylvia.

[cherylann in reply to sylrome]

Hello, I was finally diagnosed with scleroderma in 1996. I live in Auburn ,Alabama. My rheumatologist is in Birmingham,AL. I am interested to know how you are coping and what meds you are on. If you care to reply, my email is [e-mail]. Take care, Cheryl

[littlemissshy]

aww, rip xx thoughts are with you and the family x

[creditcrunchie]

I think it always comes as a shock when you hear of a death from scleroderma. But those of us who are constantly monitored by the team of specialists will be amazed that she has never had any hospital care and it is worrying that she may not have had the best chance at life. Our thoughts are with you and maybe in time when you can talk about things you will be able to help people who have the same auto immune illness understand how this could happen. I would like to take up Madge's fears and suggest that maybe she could write in her queries as a separate question then people could talk to her about any ways she could get help.

[wartsandall]

Dear Sean.....I'm so sorry to hear of your loss...my thoughts and prayers are with you at this very sad time...God bless....

[Thelma]

Dear Sean1: I am certainly praying for your emotional healing as you endure this tough time with the loss of your sister. I lost my only sister in 2006 from another illness - however, identify with witnessing sickness and then going through the emotional and loss of loosing that person that you loved so much. We're all learning along the way about this rare and peculiar disease. I was diagnosed with Scleroderma and Raynauds in 2008 after having been intensely ill during 2005. Again, my kind and concerned thoughts and prayers remain with you and yours. GOD bless you, Sean1.

[graygirl1]

Hi Sean1. I am so very sorry to learn of your loss and send you and your family my heartfelt sympathies. I know how it is to lose a loved one and wish I had a magic wand to ease your aching heart. I've lost a loved one just two days ago.

I suffer with Raynaud's and know little about Scleroderma but you have come to the right place for advice and support. All I know is that for me it's a real trial. I am sorry that your sister had no treatment. Any idea why not?

It would be sad if she coped without any medical intervention. It's hard to find the words to bring you comfort at this difficult time but I will be thinking of you and your family and wish you all the best.

Please keep in touch and let us know how you're doing.

Kind regards.

Grayygirl1

[cherylann]

So sorry for your loss. Scleroderma affects different people in many different ways.

[newbe]

Dear Sean so very sad to hear your news and even sadder that your sister had no hospital treatment. I do hope you will get some comfort from the support this group can offer you. Thinking of you.