Harriet’s story: PSP 1A

Harriet's story-PSP 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.”

Want to share your story? Please email Toni (our Communities Engagement Officer) via: toni@metabolicsupportuk.org

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