Anyone else out there with Takayasu?

Posted by shoeyparents @shoeyparents, Jul 29 6:52am

I was diagnosed less than a year ago. My subclavian arteries are completely blocked, and I am struggling with understanding what is going to happen to me. My hair started falling out and I don't know if this is part of the disease or something else. I'm just feeling overwhelmed with it all!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

John, Volunteer Mentor | @johnbishop | Jul 29 8:11am

Hello @shoeyparents, Welcome to Connect. It can be overwhelming dealing with a diagnosis and not knowing what the future holds. You are definitely not alone and it can be helpful to learn as much as you can about the condition. There are several other discussions on Takayasus that might be helpful:
-- Takayasus Arteritis: https://connect.mayoclinic.org/discussion/takayasus-arteritis/
-- @christol started this discussion and may have some thoughts or suggestions to share with you - Takayasua Vasculitis: https://connect.mayoclinic.org/discussion/takayasua-vasculitis/

Mayo Clinic has some diagnosis and treatment information here - https://www.mayoclinic.org/diseases-conditions/takayasus-arteritis/diagnosis-treatment/drc-20351340. Also, The American Heart Association has some information on the condition where you can learn more:
-- Current and Future Treatments for Takayasu Arteritis: Toward Cardiovascular Risk Modification
https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.125.076308
Has your doctor or care team started you on any medications for inflammation? Have they suggested surgery for the blocked subclavian arteries?

christol | @christol | Jul 29 5:04pm

I can feel for you,my 33 year old daughter has the same as you. she changed Dr's many times it's rare so research a lot of changes, don't stop asking questions. Take care of yourself, keep pushing forward.