Takayasu Arteritis is a rare form of vasculitis characterized by inflammation that damages large and medium-sized blood vessels.
Hey Karen, I am sorry that it has taken so long for me to reply....I hope you are doing great...My left subclavian is 100 percent occluded as well as my SMA....I have taken cytoxin, predision and Remicade..at the present time in all I think I take abou16 pills daily...Hope to hear from you soon... Your fellow TA'er Tammy
Hi Tammy, My name is Karen and I also have TAK. How long ago were you diagnosed? I was officially diagnosed in Jan 2008, but have had it MUCH longer than that. I had carotid to subclavian bypasses on both sides about four years ago. Doing ok now :) Karen
I wanted to introduce myself..My Name is Tammy and I have TAK...I would love to get to know others that have this rare disease...I think it is wonderful that we have this site so we can share... Tammy
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Having read what I wrote here while confined to my hospital room on day three of my current stint for very low hematocrit values (<2.5) (July 2021)
I realize how atrocious what I had...
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