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Here's to Your Health:  Scleroderma  |
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
 Posted - Aug 24 2010 : 07:37:45 AM
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Does anyone know of, have themselves, or have a family member with scleroderma disease? My daughter is in the process of further and more detailed diagnosis of this. Any experience and guidance and prayers would be a blessing!! Thank you, Linda
Country at Heart |
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kristin sherrill
True Blue Farmgirl
11303 Posts
kristin
chickamauga
ga
USA
11303 Posts |
Posted - Aug 25 2010 : 07:18:19 AM
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Linda, I don't know a thing about it other than that movie with Dana Delaney in it. I think that's her name. It was based on a true story. But I had never even heard of it til then. And nothing ever since. I hope your DD does not have it. I will be praying for her.
Kris
Happiness is simple. |
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Aug 25 2010 : 09:20:00 AM
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Thank you Kristin, yes, it is what she has. Do you have any idea what that movie was? Never heard of it. We are doing as much research as we can. It can be mild or extremely serious. Thank you!
Country at Heart |
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kristin sherrill
True Blue Farmgirl
11303 Posts
kristin
chickamauga
ga
USA
11303 Posts |
Posted - Aug 25 2010 : 11:00:01 AM
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Linda, it was years ago and I cannot remember what the name of it was. When will she know which kind she has?
Kris
Happiness is simple. |
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Betty J.
True Blue Farmgirl
1403 Posts
Betty
Pasco
WA
USA
1403 Posts |
Posted - Aug 25 2010 : 11:13:56 AM
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The movie was called "For Hope" and was made in 1996. A critique of the movie says it was not "easy to watch." It does indeed star Dana Delaney. That is about all I could find out. I just googleld Movie about Scleroderma
Betty in Pasco |
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Aug 25 2010 : 3:23:23 PM
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Betty, thank you for doing that. I will see if I can locate it. Kris, my daughter is waiting on yet another referral to a teaching hospital after seeing about 4-6 referred Drs now!!
Country at Heart |
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Bear5
True Blue Farmgirl
13055 Posts
Louisiana/Texas
USA
13055 Posts |
Posted - Aug 26 2010 : 7:16:21 PM
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Hi Linda:
One of my best friends has Scleroderma. She has been living with the condition for approximately four years. If you have any questions, I would rather you email me privately. Because it's my friend, I wouldn't want to say too much online. She is doing extremely well. I can tell you that she will say Prayer was a part of her healing. I will keep your daughter in my prayers. God Bless.
Marly
"It's only when we truly know and understand that we have a limited time on earth- and that we have no way of knowing when our time is up- that we will begin to live each day to the fullest, as if it was the only one we had." Elisabeth Kurler-Ross |
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Aug 26 2010 : 7:22:51 PM
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Thank you Marly. I will email you thru MJF this weekend! Bless each of you for your thoughts and prayers! Blessings, linda
Country at Heart |
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Bear5
True Blue Farmgirl
13055 Posts
Louisiana/Texas
USA
13055 Posts |
Posted - Aug 26 2010 : 7:44:40 PM
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Linda:
I will talk with my friend tomorrow. Hopefully I'll have news that can help you and your daughter. Take care. God Bless.
Marly
"It's only when we truly know and understand that we have a limited time on earth- and that we have no way of knowing when our time is up- that we will begin to live each day to the fullest, as if it was the only one we had." Elisabeth Kurler-Ross |
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Sep 04 2010 : 07:47:32 AM
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Ladies, info that you are sharing has been very helpful and encouraging! Bless you, Linda
Country at Heart |
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Roxy7
True Blue Farmgirl
1083 Posts
Robin
Denver
CO
USA
1083 Posts |
Posted - Sep 05 2010 : 5:48:51 PM
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Linda,
My friend has linear scleroderma. It affects her skin only. She uses a steroid cream her Dr prescribes called Lidex. She asked what kind you have. She is also a nursing student and may have some suggestions. |
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kristin sherrill
True Blue Farmgirl
11303 Posts
kristin
chickamauga
ga
USA
11303 Posts |
Posted - Sep 06 2010 : 6:26:50 PM
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Linda, any news yet about what kind your daughter has?
Kris
Happiness is simple. |
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Sep 07 2010 : 7:44:39 PM
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She sees another specialist on the 14th. Hoping for more of a Dx then that narrows it down. From some of her recent symptoms we do fear that it may be systemic. A huge time of prayer! Thank you all, Linda
Country at Heart |
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Bear5
True Blue Farmgirl
13055 Posts
Louisiana/Texas
USA
13055 Posts |
Posted - Sep 10 2010 : 9:55:25 PM
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Linda:
How are you and your daughter doing? Any news yet? I continue to keep you both in my prayers.
Marly
"It's only when we truly know and understand that we have a limited time on earth- and that we have no way of knowing when our time is up- that we will begin to live each day to the fullest, as if it was the only one we had." Elisabeth Kurler-Ross |
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Sep 15 2010 : 12:21:13 PM
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Thank you ladies! She saw yet another Dr. Mon. Again, another dead end and wasted trip. She is now going to try and get a referral into UCLA, in L.A. They have a scleroderma center there that hopefully will finally help her. They keep sending her to dermatologists and rheumatoidologists that just kinda shake their heads and say they have not a lot of knowledge on this disease. It has been VERY fristrating and discouraging to say the least. Family is doing our own online research to help. I think we know more than some of the Dr she has seen do. What is hard is instead of just letting her go, they too, could do this searching and talking to other Drs and get the ball rolling for some ideas of any treatment. There isnt a cure, but there are meds to help mamnage the symptoms and in some cases slow it down. I cannot thank all of you enough for your help and prayers!!! Linda
Country at Heart |
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Bear5
True Blue Farmgirl
13055 Posts
Louisiana/Texas
USA
13055 Posts |
Posted - Sep 16 2010 : 09:49:14 AM
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Linda:
I continue to pray for both of you. Let me know if you need any more information from my friend.
God Bless.
Marly
"It's only when we truly know and understand that we have a limited time on earth- and that we have no way of knowing when our time is up- that we will begin to live each day to the fullest, as if it was the only one we had." Elisabeth Kurler-Ross |
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Sep 17 2010 : 1:59:32 PM
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Marly, I forwarded your email to my daughter and I cannot thank you enough!! All of you for your prayers , support, and encouragement!! Linda
Country at Heart |
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kristin sherrill
True Blue Farmgirl
11303 Posts
kristin
chickamauga
ga
USA
11303 Posts |
Posted - Sep 17 2010 : 4:55:02 PM
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Linda, I hope she can get into UCLA soon and get this taken care of. This is frustrating. It seems like doctors just don't care about people anymore. Just the money. I know there are some good caring compassionate doctors out there. But where are they when you need them? Thanks for keeping us updated on your DD. I am so sorry she is going through all this on top of everything else now. She will be in my thoughts and prayers.
Hugs, Kris
Happiness is simple. |
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Sep 20 2010 : 2:11:17 PM
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Will keep giving updates. Thank you all sooo much!
Country at Heart |
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Nov 20 2010 : 05:33:09 AM
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UPDATE! Well, the insurance company denied the referral for UCLA. Sooo, back to square one. Thank you all for your help, emails, prayers, and concern! All of you have been a blessing, thank you! Blessings, Linda
Country at Heart |
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Bear5
True Blue Farmgirl
13055 Posts
Louisiana/Texas
USA
13055 Posts |
Posted - Nov 24 2010 : 3:01:57 PM
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Linda:
How sad. My prayers to you and your daughter will continue. God Bless.
Marly
"It's only when we truly know and understand that we have a limited time on earth- and that we have no way of knowing when our time is up- that we will begin to live each day to the fullest, as if it was the only one we had." Elisabeth Kurler-Ross |
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electricdunce
True Blue Farmgirl
2544 Posts
Karin
Belmont
ME
USA
2544 Posts |
Posted - Nov 25 2010 : 07:44:01 AM
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Insurance companies are well known for denying treatment. You should protest and see if some of the doctors your daughter has seen will write a letter or a referral. There must be some sort of help available, I wish I weren't such a dolt with the computer, but I sure hope your daughter gets the help she needs.
Karin
Farmgirl Sister #153
"Give me shelter from the storm" - Bob Dylan
http://moodranch.blogspot.com
http://domesticnonsense.etsy.com |
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Nov 26 2010 : 1:07:23 PM
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Thank you everyone!! They are fighting the decision. We will see what happens.
Country at Heart |
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Here's to Your Health: Scleroderma |
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Scleroderma
