According to a story from news.vanderbilt.edu, Charlotte Haffner has been working hard to advocating on behalf of amyloidosis patients. She recently underwent a heart transplant and stem cell transplant in order to treat her own amyloidosis. It is likely that this procedure was able to save her life. Now, she has been spending much of her time spreading awareness about this rare disease.
Amyloidosis is a disease in which abnormal proteins called amyloid fibrils begin to build up in the body. There are many different types, with some being acquired whereas others have genetic origins. Symptoms include fatigue, weight loss, leg swelling, shortness of breath, enlargement of the tongue and spleen, bleeding, and faintness upon standing. Treatment focuses on reducing the amount of the protein that is involved. Amyloidosis is ultimately fatal without treatment, and can kill in as little as six months in severe cases. To learn more about amyloidosis, click here.
Since her surgery, Charlotte has been pushing to have March designated as amyloidosis month in Tennessee. She just recently got her wish, which makes Tennessee the first state to actively attempt to bring greater awareness to the condition. The process took Charlotte nearly a year to accomplish. For Charlotte, the main emphasis in raising awareness is to increase the speed of diagnosis, which can make a huge impact in treatment effectiveness.
Charlotte is also responsible for founding an amyloidosis support group in the Nashville area, and she also helped coordinate meetings for the organization across the state. She also helped develop the multidisciplinary amyloid program at Vanderbilt, which is dedicated to developing treatments and researching the mysterious origins of amyloidosis. Her doctors have been impressed by her dedication, especially after the struggles that she had faced with her own case.
The work of advocacy is not done for Charlotte. Now, she is working to get similar awareness initiatives started in other states. Ideally, amyloidosis awareness will start spreading nationwide thanks to these efforts. For Charlotte, advocacy is the only option that has made sense to her since the operation. After all, she wants to make sure that other lives can be saved.
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If you would like to learn more about amyloidosis, check out our partners, the Amyloidosis Foundation.
