Sadie’s story

I was born with Primary Ciliary Dyskinesia. I have had to manage my condition since I was little. This started with my parents helping me with physio – we used to do percussive PCD on my back. As I grew up, I wanted to learn how to manage this myself. I knew what I needed to do to keep myself healthy as my condition has always been there.

Now I am at University, this is just a part of my life. I do my physio every evening. I do my nebuliser and nasal rinse. I sometimes find the management of my condition frustrating. Some days it feels fine and I am in the routine and other times I feel fed up with it but I don’t ever skip days.

Growing up, we went to PCD family days. This was a chance to meet with other people and learn from each other. It was nice to be with other people who had PCD. I know my parents used to pick up a lot of techniques from other parents. As I’ve grown up, I now don’t know anyone personally with PCD. I’d like the chance to meet other people but as a young adult there are less opportunities.

I managed my condition quite well when I was younger but I found school hard. I would try not to cough as it felt embarrassing. I would hold it in till I got home and then sometimes I would have a cough explosion. My nose was always running or blocked and I was bullied for this. My doctor always explained that I would get ill if I didn’t keep on top of things so I often feel anxious about getting infections.

Growing up, I was seen at the main hospital by a paediatrics team. They were really helpful and supportive. I used to go every 3 months and that meant that any infections were caught early on. They gave me a lot of help and support with learning my own physio and breathing exercises.

I turned 18 during the COVID-19 pandemic. The shift to adult services at this time was not good. My paediatric team prepared me well for the move, but I was given no support when I arrived within adult services. I did not know any of the team and felt that I was left without support for almost two years. This was not great and very different to my time in paediatrics. After the pandemic, I was given an annual review but this felt insufficient compared to the previous meetings which took place every 3 months.

Trying to get hold of anyone in between reviews was also really difficult. There was one time that I sent sputum samples in September and I didn’t hear until November that I had a pseudomonas infection. I felt that the adult support was non-existent. I had to go onto intravenous (IV) antibiotics at one point and it was very stressful. No one really explained anything to me.

After these experiences, I actually chose to move to a different hospital. The team are much better – they are hands on and responsive. They are friendly and it feels that they care about me. They have given me patient information and they keep me updated on what they are doing. The hospital is further away and it is a long journey to get there but it feels much better for me now.

I get a lot of health anxiety about pseudomonas and worrying about getting ill. If it keeps recurring, I worry about being on nebulised antibiotics as a baseline and I worry about going into hospital and being on intravenous (IV) antibiotics. The hospital has offered me some support for these mental health concerns but I am on a waiting list. I might seek support separately at my university as they offer therapy as a support for students. I feel like my mental health is very linked to my condition and it would be good to combine the support that I am given from the hospital.

I think sharing our stories about transition is really important and a useful way to understand others experiences.