I am a patient there as well. I first saw Dr. Berk back in 2007 for my localized amyloidosis. You may receive an email from BU about their monthly online patient support meeting. Its held on the first Thursday of each month from 1-3. I urge you to join us if you can. You will be able to meet and hear from other BU patients who share their diagnostic and treatment journeys and offer support to each other. I will be moderating the meeting and I do hope you can join us.
Thank you, I will try to attend.
Thank you. The 2-day program at Boston Medical Center was amazing. As the test results now role in I'm getting worried and your input is encouraging.
BMC as in Boston Medical Center? If so, and you are being seen by the doctors in their amyloid center, just know you are being treated by some of the top amyloid specialists in the WORLD who work at the Original Center of Excellence in the US for the treatment of amyloidosis. I was on a webinar earlier today with several amyloidosis experts from around the US and one of the cardiologists mentioned he had been asked by an insurance company how he knew if the ATTR drugs were working. He told them because his patients are still alive! Without treatments, the survival rates are not good. But with treatments, they are SO much better! The treatments and understanding of this disease have improved greatly over the past few years. Research is going full speed ahead and we have hope that the depleater drugs in clinical trials now will prove to be effective. There is a lot of hope now for those impacted by this disease!
It's understandable to feel concerned after receiving this diagnosis. Early diagnosis is actually a positive thing - it allows for prompt treatment that can help slow disease progression. Spinal stenosis, which causes narrowing around the spinal cord, is actually one of the early warning signs of ATTR, particularly in Show Full Answer