Wednesday, June 27, 2012

Introduction

Hello, my name is Kira and I was diagnosed with scleroderma four years ago.  I would like to spread the word about this disease.  I have the CREST syndrome of scleroderma.  I have come to grips that I have this connective tissue disease but through my research I've found out that a lot of people really don't know about scleroderma.  There are a numerous amount of people who have this disease but it does not define you and although you have your good and bad days overall the more you know the better off you are.  I would like any feedback, information, opinions or comments.  Not everyone can relate to the issues surrounding this situation so even if you need positive feedback or just someone to chat with that know what your going through please feel free to chime in, calling all my scleroderma sweeties.
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Location: Irvington, NJ 07111, USA

8 comments:

  1. Karen VasquezJuly 4, 2012 at 9:51 AM

    Hi, thank you for blogging about your experience with the disease. I look forward to following you blog and helping you spread the word. Are you on Twitter and or FB? I would love to follow and like if you are.
    Hugs,
    Karen

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    1. Scleroderma SweetieJuly 5, 2012 at 8:55 AM

      Thanks for the support, there are so many of us but not enough people know what we go through on a daily basis. Please continue to follow me.

      Delete
  2. HereComsTroubleJuly 4, 2012 at 10:33 AM

    Hi Kira,
    Thanks for taking the time to educate others on Sclerderma. Such as I was 13 yrs. ago when first DX w/Sclerderma...didn't have a clue what it was or wpuld do to me.I know that when I was told & first DX w/Lupus in 1998,educated myself on that disease.Afer being hospitalized in Dec 1998 through Feb 1999,was DX w/a undermass of Sclerderma. Loss 50% of my lips and 5 bands of skin on my neck. I wish someone had a blog/website to educate me on life's new journey of changes. I commend you & supoort you in your venture of educating others. Just like a bag of tricks..ya just don't know what you will get w/Sclerderma. Everyone's journey is different.

    Thank you Angel*
    HereComsTrouble ~ Via Twitter

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    1. Scleroderma SweetieJuly 5, 2012 at 8:57 AM

      Thank you so much, i just want people to know that their not alone, I'm learning about this disease everyday but along my journey i would like to inform and share what I know. Please continue to follow me and Im open to anything that you could share with me.

      Delete
  3. Xandra DekkerJuly 4, 2012 at 10:38 AM

    Hello Kira,

    My name is Xandra and I have also scleroderma. Because there is in the Netherlands almost no information available, I started a blog with information about scleroderma I had already collected. I write in Dutch but there is a Google translation button on my blog. I continue to follow your blog.

    Sincerely,

    Xandra

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    1. Scleroderma SweetieJuly 5, 2012 at 8:57 AM

      Thank you Xandra, we can keep each other informed.

      Delete
  4. len hollidayJuly 4, 2012 at 12:05 PM

    I'm Len Holliday. I have a bad case of Sarcoidosis. At 52 years old it has taken a toll on me. How do you ever get this stuff to stop? I cannot hear out of my right eye at all. Just got up one morning last week and my hearing was gone. Pray for me. lenholliday@yahoo.com

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  5. Scleroderma SweetieJuly 5, 2012 at 8:54 AM

    Hello Len, I will pray for you. Please follow my blog and let me know how your doing.

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