Harriet’s Story: Living with PSP Type 1A

“Growing up with Pseudohypoparathyroidism Type 1A, underactive thyroid and coeliac disease has been a challenge at times however having a bright and bubbly personality, I just ignore and push through everything.

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.”