Hey, are you still around to TH-cam? Sorry to hear that you have Amyloidosis but I’m glad they found it early. I was 53 when they found mine but I’m sure it started many many years ago. Stay positive as you can! I think that is one of the things that has pulled me thru. When I was diagnosed I was almost bound to a wheelchair. Next month, I’m rafting the Grand Canyon so there is hope!
Hi Dylan! I am one of the members from the group researching FA at UNC Chapel Hill School of Nursing's Genomics course. I just wanted to say thank you for letting our member, Idil, interview you! We hope to be able to show you what we did really soon!
I am 36 and my fat pad biopsy came back positive last week. My dad was diagnosed only three years ago. he has primary amyloidosis and I haven't been typed yet. But I have neurological and gastric involvement.
Dylon I went through it with my husband. It is so hard to watch a love one how has it. Watching my.hisband pass away I tried to be strong but I broke down. Watching this video I am crying my eyes out.. we need to.find a.cure for Amyloidosis
Thank you so very much for your video, Dylan. I would love to have an update on how you are getting on. I have Hereditary Amyloidosis myself, and also lost family members. If you could let us know how your life is for you now. Best wishes.
This is creepy.. I have the exact same story, shifting ages a tiny bit. My mom passed from Amyloidosis on 4/24/2007, she was 48 years old and was diagnosed at age 42. I’m 36 and have tons of the symptoms yet haven’t gotten a diagnosis. I’ve told 4 doctors in my area my mom passed from it and I want to get tested.. they all told me it’s too expensive and we’ll do blood work first. They string me along with tests and still haven’t spoken to a real doctor. You know any good amyloidosis doctors near California? My brother and sister also have symptoms. And I play the guitar like a MF Riot ✌🏽🤙🏽 Hope you’re doing well.. take care. - Skott
So sorry for your loss! We test for serum amyloid A( normal blood test)to control amyloid derived from secondary amyloidosis. Not all people facing chronic inflamatory disease develop Amyloidosis(on its varied forms)only those who have genetic type of gene like SAA.1 if I got it well. However ,symptoms are similar to other diseases.
Hey, are you still around to TH-cam? Sorry to hear that you have Amyloidosis but I’m glad they found it early. I was 53 when they found mine but I’m sure it started many many years ago. Stay positive as you can! I think that is one of the things that has pulled me thru. When I was diagnosed I was almost bound to a wheelchair. Next month, I’m rafting the Grand Canyon so there is hope!
Bobby Fish which kind of Amyloidose you got?
Hi Dylan! I am one of the members from the group researching FA at UNC Chapel Hill School of Nursing's Genomics course. I just wanted to say thank you for letting our member, Idil, interview you! We hope to be able to show you what we did really soon!
Blessed and honored to know you not only as a person but as a friend. Keep working your magic.
My mom has it and I just got diagnosed last week, im 28 and we also think my younger sister has it too. keep fighting!
I am 36 and my fat pad biopsy came back positive last week. My dad was diagnosed only three years ago. he has primary amyloidosis and I haven't been typed yet. But I have neurological and gastric involvement.
Dylon I went through it with my husband. It is so hard to watch a love one how has it. Watching my.hisband pass away I tried to be strong but I broke down. Watching this video I am crying my eyes out.. we need to.find a.cure for Amyloidosis
Thank you so very much for your video, Dylan. I would love to have an update on how you are getting on. I have Hereditary Amyloidosis myself, and also lost family members. If you could let us know how your life is for you now. Best wishes.
This is creepy.. I have the exact same story, shifting ages a tiny bit.
My mom passed from Amyloidosis on 4/24/2007, she was 48 years old and was diagnosed at age 42. I’m 36 and have tons of the symptoms yet haven’t gotten a diagnosis. I’ve told 4 doctors in my area my mom passed from it and I want to get tested.. they all told me it’s too expensive and we’ll do blood work first. They string me along with tests and still haven’t spoken to a real doctor. You know any good amyloidosis doctors near California?
My brother and sister also have symptoms.
And I play the guitar like a MF Riot ✌🏽🤙🏽 Hope you’re doing well.. take care. - Skott
So sorry for your loss! We test for serum amyloid A( normal blood test)to control amyloid derived from secondary amyloidosis. Not all people facing chronic inflamatory disease develop Amyloidosis(on its varied forms)only those who have genetic type of gene like SAA.1 if I got it well. However ,symptoms are similar to other diseases.
@@ramonab2029 pls can u tell me what kind of taste should I have for to find out if I have this thanks