The Scleroderma Society


Hi I have written before on here about various things but sometimes I feel scared for the future my daughter was diagnosed at 27 with fydromyalgia and scleroderma what does the future hold for her is this something that will cut her life short u can read such terrible things she has no family of her own no partner how ull will she get no one seems to have any answers or is that the way it is

A worried mom

4 Replies

Stop reading things! Everybody is different and will handle illness in their own way. She will have plenty of support from her rheumatologist...hopefully she has been referred to why not go with her to her appointments ...if she will allow...and any questions and worries just ask the rheumatologist. My daughter usually accompanies me on my appointments and will ask questions when she wants thing clarified or understood, anything you read on the internet will probably be scary and have no basis in your daughters case. Hope this helps. Just be a good support for her and keep positive! Best wishes going forward.


Thanks for your reply I have been with her to appointments but usually the don't give to many answers also haven't much faith in our rheumatology see different ones so that's why thought I'd ask here last time they cancelled her lung appointment till nxt year and rheumatologist due around Christmas Day I don't think so I would like her to get to this proffesser Denton or the QE ??


I am 21 and only have my mum . I would love a family of my own someday but it's so hard to see a future . I just got out of a 3 year relationship and feel like I'm going to be on my own forever . I'm at uni away from home which is making it worse right now. Waiting for appointments is the worst part as well . Wish I had private insurance


That must be so hard she was in a 9 year relationship but this all happend after just when she thought something else was going good but yes private health insurance would be good, she did go and see a private doctors at bupa about £70 I think but he was much help could tell her any thing that others hadn't so a scleroderma specialist would be nice

Best of luck

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