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Informing People About Sd.

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#1 ShawMJ


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Posted 04 May 2007 - 06:15 PM

Hi everyone a week ago today I went to a surprise birthday party for my 85 year old aunt.I was greeted by one of my cousin's wife who asked me to sit by her.I wondered why and she told me her niece had just been diagnosed with sd and she wanted whatever info I could give her about the disease.I asked her if she knew what type and she said "NO'.I then went into Crest and Diffuse and gave her what the Crest meant and then started just asking her questions about her niece.She said that she's had it for 2 years now and was just finding out what she had.Sound Familiar? She did say that her face is not as tight as it was and that the dr.had her on prednisone but she didn't know the dosage.I told her all I knew and she was grateful,I told her that its scary and to tell her to take it one day at a time.Whoever the doctors was gave her the old "10 year thing".I told her that was said in the past and that its not like that now as they know more etc than they did those years back.Can't believe theres some still living in the 'dark ages".I'm going to give her the address to this site as I know it would help her as it has helped me.She thanked me a lot and was going to call her niece when she got home.I told her things she didn't know and she knew her niece didn't either,guess they didn't give her too much info.I hoped I helped and wish I would have known someone I could have talked to,but I found this and it made a huge difference.Hope all of you are doing okay,hang in there everyone maybe some day there WILL be a light at the end of the tunnel! In the meantime SMILE. Mary-La.

#2 Shelley Ensz

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Posted 06 May 2007 - 06:23 AM

Hi Mary,

That is wonderful that you were able to be of such a help to your aunt her niece! It sounds like you really helped to get them on the right track with scleroderma. I hope she joins the forum, too. Or at least gets some more (and more current!) information to work with.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 WestCoast1


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Posted 06 May 2007 - 09:51 AM

It sounds like you did a great thing! It is so hard to believe that there are Dr.s out there who still can't diagnose or arn't aware of certain illnesses. Thats where empowering yourself with knowlege comes in handy. I hope she finds a correct treatment that can help her deal with her illness.



#4 kelowna52


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Posted 06 May 2007 - 10:44 AM

Hi Mary, that's great that you were there for her. I was so glad when I found this website. I try to talk to as many people as I can about this desease. There are so many people that have never heard of it before. Keep up the good work. Have a great day.

Jackie S.