Lived experience
Experiences
Accounts from people who have been through gene therapy, and from the people alongside them. Grouped by who is telling the story, because what a parent noticed is not what the patient noticed.
One person's experience, not medical advice. Written by a person describing their own life. It is not clinical guidance and has not been reviewed as such.
Patients own their own words. No one has permission to copy an experience from this site and use it elsewhere. Whose words these are
Patient experiences
From people who had gene therapy themselves, deciding, going through it, and life afterwards.
1 shared
Parent experiences
From parents of a child or teenager who had gene therapy. Consenting on someone else's behalf, the isolation weeks, and watching them recover.
No experiences shared yet
Healthcare professional experiences
From nurses, GPs, hospital teams, teachers and employers, what the pathway looks like from alongside it, and what they wish they had known.
No experiences shared yet
Partners, siblings and friends
From the people who held everything else together, partners, brothers and sisters, and close friends.
No experiences shared yet
Talking to a person
Asking for support, and sharing what you have been through, are two different things. Choose the one that fits.
Would you like to speak to someone who has been through it?
A page can only go so far. If you would rather talk to a person, you can ask. You will be contacted first. Nothing is published.
Share your experience
If you have been through it, you can say how it was, and choose a nickname or your real name to sit with those words. If you are willing to talk to someone who is still deciding, there is a question about whether your contact details may be kept. Nothing is published.