hATTR Amyloidosis – Sophia’s Story
Film production for Alnylam
Film transcript
I coped by myself, I didn't know where to go to speak to people with similar conditions at the time. Coped I by myself. And no one should have to cope by themselves. My name is Sophia, I'm a mother of two children. My children are both adults. I've been with my husband for over two decades. I live in London, I'm currently an assistant head teacher in a secondary school and my primary science is chemistry. Well my husband and I have always been interested in genetic tests. He was the first one that introduced it to me. Getting that report back was a bit of a shock for my family to have, the genetic marker of hATTR amyloidosis, with myself and also with my sister who later decided to also have a private genetic test done. Well prior to having the genetic test, I was referred several times to the neurology department, over a course of four years. I decided to not pursue that any further. I sort of knew something wasn't quite right, but, I don't like being a burden to our healthcare system so to speak. I know it's tough for them so I decided to leave it so when I got the genetic test and I had the results from that genetic test I pursued it with my general practitioner. With the general practitioner she wanted proof and to give her that proof. I had to produce the genetic report and give it directly to her. The only person that can really help you is the doctors, the nurses, your brothers, sisters, aunties and uncles who have this stigma around the medical profession needs to be put aside. So if you believe you have symptoms for this condition, you are convinced that something's not right, you have to have that courage to go and see them and you have to persevere until you get the outcome that you're satisfied with. So I'm grateful, and I am grateful. I want to be part of any future research. I want to be like the living embodiment of what and how this condition can change with treatment. I want to be an ambassador? Yeah. I don't want to be the patient in the centre just going with the times and listening to all this information and x y and z. No, I want to be in it. And what better way to be in it than to share that with others as well. And then they'll believe.
Transcript generated automatically.
A personal film sharing one woman’s experience of living with hereditary ATTR amyloidosis.
The brief
Alnylam wanted to bring the experience of hereditary ATTR amyloidosis to life through a personal patient story.
The film needed to help audiences understand the impact of the condition on an individual and her family, moving beyond clinical information to reveal the realities of living with a rare disease.
The idea
Sophia’s story offered an intimate perspective on the condition.
By allowing her to speak directly about her experience, the film could communicate the emotional and practical impact of diagnosis and life with ATTR.
The production
Blonde produced the patient film for Alnylam, capturing Sophia’s story through a personal interview and carefully considered supporting imagery.
The film was developed to communicate the experience in a sensitive and accessible way for healthcare audiences and wider communications.
The result
A patient story film bringing a personal perspective to the experience of hereditary ATTR amyloidosis.
Blonde’s role
Film production, patient interview, direction and post-production.
Credits
Client: Alnylam
Production: Blonde
