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Brianna's Page



Welcome to Brianna's web page. It has been provided as a way to keep everyone updated on her medical status.
In July 2004 she was diagnosed with juvenile dermatomyositis. It is a very rare disease thought to be auto-immune. Some of the symptoms include: progressive muscle weakness, active inflammation of the muscles, muscle pain , muscle atrophy, muscle contractures, fever, rash, fatigue, malaise, irritability, weight loss, difficulty swallowing due to weak muscles, joint pain and inflammation, calcium deposits under the skin (calcinosis), vasculitic ulcers, slowed growth, and mouth ulcers. We keep finding out about more but that is enough!

Because it is so rare there is little research being done. There is no set treatment protocols. They just try different combinations of the same (older) drugs to hopefully get a good response.

Currently there is no cure.



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Journal

Monday, July 13, 2009 8:11 AM CDT

Well today it has been 5 years since Brianna was diagnosed. In some ways it seems like a lifetime ago and in other ways just like yesterday. It has definitely been a rollercoaster ride to say the least.

Things are going pretty good right now. We are just enjoying the summer.

On Wednesday of this week she will be having dental surgery. They will be removing 9 teeth! She is pretty scared but handling it like a champ as usual.

Hope everyone is having a great summer.

Love,
Kim and Bri

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Hospital Information:

Medical City Hospital Dallas, TX
Children's Memorial Chicago, IL


Links:

http://www.curejm.com/   Working to find a cure!!!
http://www.ninds.nih.gov/health_and_medical/disorders/dermato_doc.htm   Nat'l Institutes of Health - Great info on JD
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Dermatomyositis    Nat'l Org. for Rare Disorders


 
 

E-mail Author: bribuggg@yahoo.com

 
 

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.
 
 
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