We just got a diagnosis within the family, there’s a real dearth of information that’s presented in an accessible way. I really appreciate that you guys are out here expanding what is available.
I've been looking for a diagnosis and knowing something is wrong for the past 7 years also. This story was really comforting because I've also been told I'm fine when I've known I'm not. It took whole genome sequencing for me to find this condition. I've had entire hospital systems dismiss me to the point where I believe my file was flagged as some kind of mental case. The psychological stress this causes is the last thing any patient needs. If I can get my strength back, I'm going to do whatever I can to combat the idea that multiple system complaints with no diagnosis justifies treatment for a psychosomatic condition. I've had doctors tell me having tests done was my problem and wanted me to get better by reading self-help books. I've read self-help books my entire adult life and knew there was absolutely no book that could fix what was wrong. The suggestion seemed absolutely absurd...like telling a type 1 diabetic to positive think their way to more insulin. I'm all for miracles, but that's not exactly what I expect when I go to the doctor.
Thanks for sharing your story. The battle to keep trusting yourself and your body is one Sean (and many amyloidosis patients) know well and we all encourage you to keep standing strong! If you'd like to talk to someone about your journey and see if there might be appropriate next steps for you concerning amyloidosis, please feel free to call or email us at +1 (617) 467-5170 or arc@arci.org
We're so glad stories like Sean's can be helpful. It's why he and we share them! We look forward to your journey too. Feel free to reach out to us at +1 (617) 467-5170 or arc@arci.org for support, guidance, or anything else! We're here to help.
We just got a diagnosis within the family, there’s a real dearth of information that’s presented in an accessible way. I really appreciate that you guys are out here expanding what is available.
I've been looking for a diagnosis and knowing something is wrong for the past 7 years also. This story was really comforting because I've also been told I'm fine when I've known I'm not. It took whole genome sequencing for me to find this condition. I've had entire hospital systems dismiss me to the point where I believe my file was flagged as some kind of mental case. The psychological stress this causes is the last thing any patient needs. If I can get my strength back, I'm going to do whatever I can to combat the idea that multiple system complaints with no diagnosis justifies treatment for a psychosomatic condition. I've had doctors tell me having tests done was my problem and wanted me to get better by reading self-help books. I've read self-help books my entire adult life and knew there was absolutely no book that could fix what was wrong. The suggestion seemed absolutely absurd...like telling a type 1 diabetic to positive think their way to more insulin. I'm all for miracles, but that's not exactly what I expect when I go to the doctor.
Thanks for sharing your story. The battle to keep trusting yourself and your body is one Sean (and many amyloidosis patients) know well and we all encourage you to keep standing strong! If you'd like to talk to someone about your journey and see if there might be appropriate next steps for you concerning amyloidosis, please feel free to call or email us at +1 (617) 467-5170 or arc@arci.org
Thank you again for these patient testimonies. I want to share my story too eventually. 🙏
We're so glad stories like Sean's can be helpful. It's why he and we share them! We look forward to your journey too. Feel free to reach out to us at +1 (617) 467-5170 or arc@arci.org for support, guidance, or anything else! We're here to help.