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Limited Scleroderma or CREST Syndrome: What helps?

Autoimmune Diseases | Last Active: Feb 17 3:52pm | Replies (89)

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@babydemonfangs

I really didn't know where else to go. I'm 25 and was just told I have Scleroderma/ CREST syndrome. I've been doing so much reading and research, only on medical websites, of course, but I'm so scared what this could mean for me.

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Replies to "I really didn't know where else to go. I'm 25 and was just told I have..."

@babydemonfangs, welcome. I can imagine you're frightened. Getting a new diagnosis, especially in your 20s is scary. I moved your post to this existing discussion:
– Limited Scleroderma or CREST Syndrome: What helps? https://connect.mayoclinic.org/discussion/crest-syndrome/

I did this so you can read previous posts and connect easily with fellow members like @shasmith @mshutch @moselurl @paulinechavez1 @marye2 @veegee @dxcrestsyndrome2020 who have been where you are today - searching for trusted information, learn as much as possible and learn to live with the diagnosis.

As we wait for others to chime in, I think you might like seeing this video with Dr. Leroy Griffing, Mayo Clinic expert, teaching about scleroderma. https://connect.mayoclinic.org/event/video-qa-about-scleroderma/

What treatment is being suggested for you?

I'm so sorry to hear this but I have lived with crest since 2001 and have control of my care and yes there are times I'm still scared. But having drs you can cIynt on and that take you seriously and treat you with respect is key. Don't back down on your care. I have switched drs multiple times because I didn't like their tone or bedsidemanner. Most of my drs are women
I have 3 male drs but I depend in my team aND am not shy when I need help.