Each person in this video is affected by amyloidosis. Each has their own story to tell the world, which begins, but doesn’t end, here.
Amyloidosis is a rare and incurable disease, affecting people in different ways. As a result, this often slows the diagnosis time, during which the disease continues to advance. Accurate diagnosis as to the type of amyloidosis is critical, as it directly determines the path of treatment.
Amyloidosis knows no boundaries. In the words of Jill Johnson, the last face in the video, “… amyloidosis does not discriminate. It will take the young, the old, male, female and all races and socioeconomic levels.”
A huge thank you to those that participated, for they are the true fighters.
The push to raise awareness is intensifying.
The fight to find a cure is ON.
A special thank you to Andra Day. Her song “Rise Up” and amazing voice brought these stories to life.
Lori Grover says
Amazing! Thanks for working so hard to spread awareness!
David Lenz says
Thanks ever so much for this video! I have cardiac AL Amy with GI and nerve involvement. Knowing that we have an Amy family and seeing these faces.
helps me. Let’s all pray that a cure comes along for each of us!
David, I see you are in Richmond VA. My husband is waiting to see what organs are involved prior to beginning treatment. Could you share with me please if you are getting treatment here or if you are going to a specialty center? Thank you!
Leslie Adelman says
It’s crazy but I actually know two people afflicted by amyloidosis. Their strength and bravery inspire me. Thank you for making it your mission to educate others about this disease and to raise money to find a cure.
Wow! What a beautiful and powerful message. Love your strength and passion!!!!
Alicia O’Bomsawin says
What an awesome job on the video! It definitely sends a powerful message and humanizes this horrible disease while proving it does not discriminate. Thank you for doing this to raise awareness. We all know early diagnosis is key in raising the chance for survival.
I will definitely share the video. Thank you again!!
Melissa Dinolfo says
Incredibly moving and inspiring. In showing the faces and families of those affected you bring it home for all of us. Thank you for creating this!
Very emotional watching this video . Well done to you taking all the time & effort it took to get this together the world needs more people like you . To everyone in this video sending you all wherever you are strength & hope ☘️Marion
Teresa M says
All of you remind us that amyloidosis can strike at any age, any gender, anybody. Here’s a hope for a cure.
John Griffith says
Mackenzie- what a wonderful and inspiring message, putting faces to this hidden disease. Thank you!
Deanna Reed says
You did an Amazing job Mackenzie …. I loved it?Awareness can save your life… I have AL Amyloidosis… diagnosed in July 2010… Had a Stem Cell Transplant in June 2011 and I’m doing great.. Life is great! God is Good … #DontBlink ?
Kim K says
As the first anniversary of my husbands death looms over me, i watched this thru streaming tears. Many of the pics were so similar of those of my husband in the hospital. Thank you fro doing this, awareness and early.diagnosis is paramount.
Morie Gertz says
Thank you for doing all the work to make this happen. This will be a benefit for the entire population and care givers
Michelle Maes says
My husband is about to have his second chemo treatment today. His stem cell transplant is tomorrow. He was diagnosed with AL Amyloidosis with cardiac and nerve involvement, in March of this year. This disease is scary and doesn’t like to back down. Neither do we. Thank you for continuing to inspire!!
This video touched my family and I in such a deep way… To see the faces of those who fought and those currently fighting brought me to tears. Mackenzie’s story and strength is truly contagious. Thank you for continuing to inspire all of us and raising awareness towards this ugly disease.
Thank you so much to Mackenzie s Mission for putting together this Faces of Amyloidosis video and for including me in it. Spreading awareness of this rare disease is crucial because it leads to earlier diagnosis which leads to saving lives. Once thought to be the disease of elderly men, a diagnosis of Amyloidosis is becoming more prevalent in younger men and women. Doctors need to recognize this and test if symptoms are present even if the patient does not fit the amyloid profile . Amyloidosis does not discriminate.
Thank you for making this amazing video it is very touching. I was diagnosed with AL Amyloidosis in August 2018 after 2 years with misdiagnosis. I am receiving treatment which appears to be working. It is wonderful this video was done to increase awareness as this disease is not widely known with no cure.
Tom Ferrara says
We are not alone. We learn from each other …. and we hope for all ….
Mary Ellen Morgan says
Thank you so much for including our Lynn and Dr Benson in this video Mackenzie. It means the world to our family and gives us hope that others will not suffer from this rare disease. Keep fighting! We will continue to spread the word. You truly are making a difference.❤️
I will do a read later and see how to submit a couple of photos of this Aussie Guy. I am one of the lucky ones who are in full remission and hanging in and now going on 12 years. Heart is holding up and the kidneys have stayed the same for most of that time. Exercise – eat well – and take every day just one at a time and go hard. Always something around the corner but we do need to get the name Amyloid out there as early intervention is key …