Medical Stories - Hereditary Amyloidosis (HA) Dylan's Story
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- Опубликовано: 15 фев 2021
- A young artist named Dylan Duncan is dealing with a rare and fatal genetic disease called Hereditary Amyloidosis, a disease that he witnessed slowly kill his mother and aunt when he was just a teenager. But until recently, see how Dylan's life has dramatically changed from a certain and gradual death sentence to renewed hope and greater longevity under the care of Dr. John Berk, a pioneering expert at Boston University School of Medicine.
Please subscribe to our RUclips channel and look for Dylan's story airing nationwide as part of a Public Television series entitled: Medical Stories. Check your, local PBS listings today! Or visit medicalstories.tv/ to learn more about this documentary series.
To help raise awareness and to learn more about Hereditary Amyloidosis, please visit: amyloidosis.org and bu.edu/amyloid/
You don't know how much this has helped me. I was diagnosis a few days ago and instantly started thinking about my death. I have a wife and 3 year old twins. The news devastated me. I start treatment hopfully in the next few days. Thank you for sharing your story. I feel like I can breath a little better now.
Oh I am so sorry to hear this :( but I am glad that this has given you and has brought you a degree of comfort. Take care of yourself and good luck. We are in a good time right now! So much hope! Thank you for your comment!
I am so so sorry :( It's the scariest thing isn't it? I'm so glad this helped and resonated with you. Stay strong and good luck with your treatments! Breath easy..there's hope out there :)
I'm awaiting a possible diagnosis 😢
I relate so much to the feeling of knowing and not being able to envision yourself as an older person. I’m a 39F with hATTR, art and music keep me going as well. 💓
Oh wow, so young :( I''m glad you have art and music in your life to help inspire you and keep you moving! It certainly helps me!
I believe he said he has the hTTP if I’m not mistaken? I’m almost jealous that he has trials, treatments for his type. I was dx’d two years ago with Familial gelsolin Amyloidosis Finnish type. It is novel to my family, and I since this has never, ever been seen before I /they (drs) really have no clue what to expect from me. My dad has been the only person who it manifested in, and it got his kidneys. My kidneys are a little involved but I have issues with almost every organ. They is no treatment available for me, besides actual organ transplant.
This disease is horrible :( I'm so sorry you're going through this. I know it's hard but try and stay as positive as you can. I know that isn't easy. Take care and all my best...I hope you're feeling okay. - Dylan