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Scleroderma - how to support a friend?

(7 Posts)
TheweewitchRoz Tue 30-May-17 22:18:48

I've recently found out that a friend has scleroderma & has lost lung function. She's being treated & is very positive about it all but I'm not sure how serious this is. Is it life limiting? What should I do to support her? She has 3 little children aged 6 & under & a very supportive DH (she's 37). TIA.

redannie118 Thu 01-Jun-17 12:51:44

Hi i haveSleroderma. In short-yes it can be life limiting/fatal esp if lung function is involved. There is a lot i could go into, but i suggest you try the SRUK website-lots of great easy-to-absorb info on there. She will be very tired and maybe in a lot of pain, so any practical help you can give will be great-if not just let her talk. Its a huge thing to be diagnosed with and as its such a rare disease theres not a lot of support available. Tell your friend to register on Health unlocked-it has fantastic online support. Can i justsay you sound lovely-most of ny friends vanished when i was diagnosed!

TheweewitchRoz Thu 01-Jun-17 13:23:17

Thanks for replying Red & sorry you're going through this too. I have suggested she join online communities / support forums as there is nothing locally but she's not keen.

Unfortunately I live in another part of the country so not close by, but have told her I can get there for the weekend anytime she needs me, but I've a feeling that she would never ask.

From what you say, I'll keep checking in & be available to listen. If there is anything else that you would have found helpful, please let me know as I just want to do whatever I can but I'm also conscious not to appear different / focusing on the down side as she is very positive & I wouldn't want to have a negative impact on that.

JessicaEccles Thu 01-Jun-17 16:44:16

Health unlocked is indeed an excellent resource- as it is such a rare disease, and much of the information online is very dated.

I also have lung involvement- but mine has never got much worse (touch wood) and I have an excellent consultant who keeps on top of all the symptoms.
To be honest, the worse things are a) the fatigue b) the fatigue c) no one knows what it is and d) people saying 'But you look really well!'.

My friends are brilliant and I am very lucky- they just invite me to everything even though half the time I'm too tired to accept.

TheweewitchRoz Thu 01-Jun-17 20:28:48

Thanks Jessica, so does that mean just carry on as normal? (& no offence taken if she says no due to tiredness)

JessicaEccles Fri 02-Jun-17 13:24:28

Yes- it's such an awful condition that affects every part of your life, that I am grateful for any relative normality.

TheweewitchRoz Fri 02-Jun-17 15:24:24

Ok, thank you. smile

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