Pauline is the Area Coordinator for our online Cushing’s Support Group
Why I volunteer…..
In 2013 I went to see my ENT doctor as my taste & smell had changed radically; wine, chocolate & fish among other things tasted terrible & I couldn’t bear to go near a fish counter without feeling really sick! They were all things that I loved to smell & eat so it was terrible when I could no longer enjoy them.
As I’d had previous sinus issues my doctor decided to order an MRI, this showed my sinuses were clear but there was a 1mm pituitary tumour.
I was referred to an Endocrinologist who ran lots of tests which showed that my pituitary wasn’t secreting any excess hormones.
Some 15 months later, following a knee replacement, my rheumatologist suggested that she thought I had Cushing’s so back to the Endo I went & she was right, all the tests were conclusive.
I eventually had my surgery in September 2015, my recovery was undramatic, however being older (62) I struggled to get back to how I was prior to the onset of Cushing’s. I’d like to say that I lost all of the two stone of weight, but I didn’t. I struggled to with my mobility which has got progressively worse, however I also have Psoriatic arthritis & inflammatory arthritis & have lots of surgeries on feet, replacement knees & hip, so that hasn’t helped!
As a retired nurse I wanted to find out as much as I could to help my recovery; I knew about Cushing’s but only from being on high doses of steroids. I’m quite computer savvy, so went online to find information, The Pituitary Foundation was my first stop; I also found Cushing’s support groups on Facebook, however they were all US based. I spent some time in them but found that their health system is so different to ours, they also don’t have the English sense of humour either. This prompted me to start a UK based group, I had met a few people at the local PF meetings, who were keen for a UK group. So in July 2016 I started the group, as Cushing’s is a rare condition it can be very lonely to go through the diagnosis process, I wanted to be able to help & empower people to try & get the best care possible.
In 4 years we have gained over a thousand members, members are given information, support & empowered to get the best care they can on their journey of testing, waiting for treatment & in the recovery process. The group has guided members in getting the correct tests & how to approach their GP, we’ve suggested Centre of Excellence to ask to be referred to & have helped them following surgery with their replacement steroids regime & of course directed them to The Pituitary Foundation website. Myself & my fellow admins are always on hand to help answer any questions if we can, or direct them to The Foundation.
For me being able to help & support others has been the silver lining in this horrible condition, through The Pituitary Foundation we found a great support in Prof John Wass who has been an advocate to us in wanting to improve the support & care we should be getting from our Endocrine departments.
Find out more about the Cushing’s Facebook group.