• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!

Getting To Know You - Archives

255 posts in this topic


I'm sorry to read of your concerns. I am going through diagnosis myself, with some pretty scary findings. It is difficult. Have you checked to see if there is a support group in your town?

Good luck,



Share this post

Link to post
Share on other sites


I'd like to welcome you to the ISN forums. I'm sorry to read about everything that you are dealing with right now. It does sound like you have a team of doctors working with you to find out what is going on and what isn't going on. I remember during my diagnosis period, it was one test after another; however, it was worth it just to know.


I'm sure after having lost your mother to this disease, it doesn't make any of this easy. Please know that a lot of new treatments have been developed in the past few years and many people have seen significant benefits. If one treatment isn't working for you, try another one.


Thanks for sharing your story in this thread. Please be sure to post in the main forum so more people can get to know you. I hope you echo has good news. Be sure to let us know.


Big Hugs,

Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

Share this post

Link to post
Share on other sites

Hi Millefleur,


I'm a "sine" myself with ILD and PH and I can vouch for what Janey said: lots of new treatments available and more coming along all the time. Another good thing is once you have a diagnosis the doctors are much more willing to schedule all the tests necessary to keep an eye on things.


This forum is truly a wonderful place. We all love and care for each other and each new member is a very welcome addition to our circle of friends. We can ask what seems like the dumbest questions, voice our worst fears, share all the things that go on and somebody will invariably send just the response we need.


I'm sorry about your mother and that you're facing all this, but glad to have you as a new friend.


JJ-Knitter (keeping fingers warm stitch by stitch :rolleyes: )

Share this post

Link to post
Share on other sites

Hello-My name is Rhonda and I was diagnosed with Scleroderma in March of 2007. I live in Warsaw, Indiana, but after 8 specialists in the years of 2006 and 2007, it wasn't until my father and ex drove me 5 hours to Cleveland Hospital, I was diagnosed. I had been suffering for almost 1 year prior to being diagnosed. I have major skin and kidney involvement, with Raynaud's, GERD, and debilitating hands.


I am now 44 years old participating in the SCOT study in Milwaukee. I travel to Milwaukee every 4 weeks to receive the chemo-Cytoxin. The study involves 12 treatments, 1 every 4 weeks, and I just received my 10th treatment. I haven't been sick nor have I lost my hair. My quality of life has improved but I am not working and don't know if I will.


My mom moved in with me after living 23 years in Florida. She was diagnosed with CREST approximately 8 years ago. I have 1 daughter, 18 years old that also lives with me. She is expecting my 1st grandchild in August.


I have a 6 yr old Brittany Spaniel named Hudson and he is the love of my life.

Share this post

Link to post
Share on other sites

Hi, I am a 42 year old nurse. I was recently diagnosed with SCL-70 one month ago. I am very scared and depressed about it. All good thoughts are greatly appreciated.

Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now