The Amyloidosis Support Group provides patients and families with excellent guidance and support. They have meetings all over the country for patients and their families with physicians who have the most experience treating this rare, serious disease. They guide patients toward receiving the best care they can possibly receive. They provide on-line contact for patients and families to share their experiences. My husband, a physician himself lost his battle with amyloidosis one year ago at age 62. The Amyloidosis Support Group was a life-line for us of encouragement and compassion.
My younger brother was diagnosed with Amyloidosis a little over five years ago, and I immediately began researching the disease. The support group that Muriel Finkel started brought me a ray of hope. You see, the doctors who diagnosed him told us to prepare for the worst and start planning to lose him soon. They gave him three months to live. I called and spoke to Muriel several times, and corresponded with her via emails many more. We attended a meeting with Muriel and some of the doctors who were willing to donate their time. Not long afterward my brother was on his way to Boston Mass. for evaluation and treatment. It has been five years of knowing that God and the blessings of modern medicine have given us more time with him. He is weak, just a shell of the man he was, but his will to survive is still strong.
Without the support of this group, I would never have known about the alternatives that were available.
With the help of some other members of the support group, we were able to get to the right people and the right place for my brother to continue to believe he has a chance of life.
I lost my life partner of 30 yrs almost 2 yrs ago. Spoke with Muriel Finkel who runs the group, she was loving,kind, compassionate z& very welcoming. At my first meeting she introduced me.
Great group, helping survivors & families !!!!
I don't know what I would have done without this group when my mother was diagnosed over 3 years ago. The support, information and resources available to people with the disease and their families is unparalleled. Amyloidosis is rare enough that it can be difficult to find current reliable information on treatments available. Many doctors see so few cases in their careers that they do not have up-to-date information on treatments and give up. This group helps sufferers find much needed expert care and offers support in every aspect of treatment. Thank you for what you do, Muriel. You are amazing!
This group has a passion to help anyone with their questions about amyloidosis. The group will try and connect you with a local chapter in your area, so you can attend face to face meetings. They will connect you to the latest medical centers specializing in treating this disease. Their message, "you are not alone" is about understanding and helping you with your new diagnosis and the effects of this rare disease on you and your family. On line support is available as well.
When my husband was diagnosed with cardiac amyloidosis last year, he was given 6 months to live by local doctors. We found this support group online, and when we joined, could not believe all the detailed and personal information and correspondence we tapped into. I had expected a faceless chat room where posts went unanswered, but instead found a group of people passionate about helping others to navigate this disease. We were given the most important thing you can get when diagnosed with this disease...Hope. The group guided us to the right specialists and the right treatments and answered our questions and held our hands. We have made great friends and have met up face-to-face with some of them at support groups and treatment centers. Following their advice, my husband now has a prognosis of 10 years or more. We owe his life in no small part to this group, and now he is able to spend his newly-won helping other "newbies" navigate their diagnoses.
I needed help finding a center of excellence and support. The toll free hot line helped me so much as did the support meeting. I was directed to a center specializing in amyloidosis and the date for my appointment was even speeded up. I achieved as much peace of mind that is possible with this disease and appreciate them more than I can say.
Review from Guidestar