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Hi Christo @christol, It must difficult for you as well as your daughter trying to navigate such a rare condition such a Takayasu Vasculitis. While we wait for members with experience to join the discussion, I thought I would share some references on the condition.
Here's a YouTube video from the Vasculitis Foundation on TAK - https://youtu.be/qKGWrF4Nwdw
"With Takayasu's arteritis, the aorta and other major arteries become inflamed. Over time the inflammation causes changes in these arteries, including thickening, narrowing and scarring. Not everyone has these early signs and symptoms. It's possible for inflammation to damage arteries for years before you realize something is wrong."
-- Takayasu's arteritis - Symptoms & causes: https://www.mayoclinic.org/diseases-conditions/takayasus-arteritis/symptoms-causes/syc-20351335.
Do you mind sharing when and how your daughter was diagnosed with Takayasu's arteritis?
Replies to "Hi Christo @christol, It must difficult for you as well as your daughter trying to navigate..."
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First thanks for your response and information. It took around 5 years and many Dr changing and a mistake by a cardio Dr. So we found a fantastic immunology Dr she took it guns blazing weeks of testing and full body scans she is relentless she also put us in touch with a Cardio specialist absolutely fantastic Dr. She is fully functional full of constant pain it is quiet advanced lots of meds some change weekly they are doing amazing trying to keep her alive. That's it in a nutshell. Thanks again for responding.