Scleroderma Information » Scleroderma » Just diagnosed! Help!
Question:
Hi Dodie, Don answered many of your questions. You didn’t mention what form of Scleroderma your sister was diagnosed with. Was it Morphea, Linear which are the localized form? or is it Diffuse,Crest, Limited which are the systemic forms? If you know the answers to those then I can provide you with links to research those individually. You may find my medical information page useful. http://SclerodermaSupport.com/medical.htm Please feel free to post specific questions here. You will get many responses I assure you. I look forward to hearing from you again soon. Dodie Manuel wrote: > My 15 year old sister was diagnosed with scleroderma about 6 years ago, > when she was 9. The docor told my mom to wait and see how things > progressed over tne next year. It seemed to have went away but just > recently has come back. The doctor didn’t explain anything to my mom and > we really don’t have an understanding of this disease. Could someone > please explain more to me and point me in the direction of a good web > site. My sisters only symptons are aching joints and muscles, especially > in left arm, and hard waxy looking skin on her left arm. If she has any > other symptoms, I am unaware what they are. Thanks for your help. > Dodie
– *** Love, Hugs and well wishes From *** Sherry Messick, Surviving Scleroderma http://SclerodermaSupport.com "We are all Beacons Of Light for Each Other" Oprah Winfrey
Response:
Dodie, I missed one. Sorry about that, there is one other site that I know of that has a place just for Juvinile scleroderma, http://www.sclero.org/support/groups/juvenile/a-to-z.html Good site, lots of info directed especially at families and juvenile scleroderma support and information. Thanks Don
Response:
I am sorry to hear about your sister, especially due to her young age. She needs to see a Rheumotologist, especially one who specializes in Scleroderma. There are many forms of this disease, so it is better to get a definite diagnosis as soon as possible to determine which type it is. Don’t be afraid to question your doctor! If he is not a specialist in this field Please! Find one. – Hide quoted text — Show quoted text -Dodie Manuel wrote in message <36AD0A60.5D48A…@kootenaytrader.com>… >My 15 year old sister was diagnosed with scleroderma about 6 years ago, >when she was 9. The docor told my mom to wait and see how things >progressed over tne next year. It seemed to have went away but just >recently has come back. The doctor didn’t explain anything to my mom and >we really don’t have an understanding of this disease. Could someone >please explain more to me and point me in the direction of a good web >site. My sisters only symptons are aching joints and muscles, especially >in left arm, and hard waxy looking skin on her left arm. If she has any >other symptoms, I am unaware what they are. Thanks for your help. >Dodie
Response:
My 15 year old sister was diagnosed with scleroderma about 6 years ago, when she was 9. The docor told my mom to wait and see how things progressed over tne next year. It seemed to have went away but just recently has come back. The doctor didn’t explain anything to my mom and we really don’t have an understanding of this disease. Could someone please explain more to me and point me in the direction of a good web site. My sisters only symptons are aching joints and muscles, especially in left arm, and hard waxy looking skin on her left arm. If she has any other symptoms, I am unaware what they are. Thanks for your help. Dodie
Response:
Hi Dodie, There are an amazing amount of sites on the internet for surfing and for information and support. The one place that I would recommend that you consider going is to the Scleroderma Foundation web site. You can find many other wonderful sites from here, but this site is a great place to go for help. http://www.scleroderma.org/ childhood scleroderma is to the best of my knowledge very hard to track, diagnose, and treat. This is why I would recommend that you try and make sure that you direct your attention to people who can offer specific support for your situation. Best of wishes to you, Don Evrgrn…@aol.com
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