Harriet’s story: PSP 1A

I was diagnosed between four and five years old due to having drop attacks ( seizures). I was referred for further genetic testing at St James Hospital in Leeds, where they found an abnormal sequence leading to further investigation and I was finally diagnosed with Pseudohypoparathyroidism (PSP) Type 1A.

Since diagnosis I have seen a variety of different endocrine specialists which have helped keep my condition stable and make sure I am taking the appropriate amount of medication.

I am now looked after by both Harrogate District Hospital and St James Hospital, endocrinology departments. Since diagnosis I have been to both primary school and high school and achieved my GCSEs. I went on to complete a variety of apprenticeship diplomas including health and social care, business administration and social media marketing. I have also worked in a variety of jobs and have never let my condition get in the way of anything.

I currently work at Harrogate District Foundation Hospital and enjoy working with a great team of people. I find a lot of people asking about my medical condition and how it affects the body however sometimes I have to make up a more simple version so people understand – and this is medical professionals!

I feel that I have been lucky, as severe learning disabilities and obesity can be associated with PSP. I do struggle with some aspects of learning however I have never let this get in the way, and my family have been very supportive helping me whenever I need it.

When I turned twelve, I was lucky enough to be put in touch with a girl called Holly by Climb. Holly also has PSP, and since then we have stayed in touch, initially as pen-pals and more recently via Facebook. It’s such a great feeling to have someone to turn to, who has similar treatment and problems, with whom you can discuss your worries.

It hasn’t always been easy to manage this condition. I had several hospital admissions as a child and still have further admissions due to a range of medical problems. I have an amazing GP practice that supports me with all aspects of my care and treatments.

I have taken a range of tablets that I will have to take for the rest of my life – these add up to a grand total of 17 tablets a day! I do get frustrated as not everyone realises that I wake up with bone pain and pins and needles throughout my body. I sometimes feel that because my symptoms aren’t visible, they aren’t taken seriously, and because of that my medical condition can go downhill if not treated quickly.

I feel that I am very lucky to have the support and guidance of excellent and talented medical staff and great support from friends and family.”