All of us here at The Thyroid Trust were shocked and saddened to receive the dreadful news that our dear friend and Trustee, Theresa Baker, had passed away suddenly and unexpectedly at the beginning of March at her home in London. Theresa will be known to many of you from her involvement as a volunteer and Trustee for the charity. For many years Theresa had been a regular helper at the Patient Support Events we hold in central London and would usually be found either on the registration desk, welcoming people to our meetings as they arrived, or behind the counter handing out teas and coffees - always greeting everyone with her lovely warm smile. Theresa also hosted several informal ‘thyroid friends’ get-togethers at the Wellcome Trust on Euston Road. Theresa was such a pleasure to be around and to have on the team - she was kind, considerate, humble, you could rely on her 100% - but she was also friendly and fun.
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Written by Jenny Allen This blog describes Jenny Allen's personal experience with postpartum thyroiditis. Some readers may find it distressing. However, we recognise that not everyone will have similar symptoms or experience the same issues with diagnosis and treatment. Jenny Allen shares her brave story and battle with postpartum thyroiditis: “It took over 3 years of being horrendously unwell to find medical support for my not so common presentation of thyroiditis and this was because I was labelled and not heard." Written by Karen George, Trustee, Thyroid Trust In January I attended the second meeting of NICE (the National Institute for Health and Care Excellence)'s new Voluntary & Community Sector Forum on behalf of the Thyroid Trust. I was eager to hear what progress had been made since the first meeting in October of last year. Once again the session was lead by NICE’s CEO, Sam Roberts, supported by several NICE staff including Victoria Thomas, head of the Public Involvement team. This time there seemed to be even more charities and patient organisations on the call - showing just how important this type of engagement is. Written by Karen George, Trustee, Thyroid Trust In September the Thyroid Trust were approached by NICE (the National Institute for Health and Care Excellence) with an invitation to attend a new Voluntary and Community Sector (VCS) Forum being established by NICE. The inaugural meeting took place on 19th October and I attended on behalf of the Thyroid Trust. The forum was led by NICE’s CEO, Sam Roberts, supported by Jenna Dilkes, Associate Director within the NICE Centre for Health Technology Evaluation, and Victoria Thomas, head of the public involvement team. Over 70 charities and patient organisations were in attendance, from a diverse range of organisations across the voluntary and community sector. The meeting explored: Hello, my name is A.R.Salandy and if you’re reading this then you’re interested in our Thyroid Poetry Cafes. During our inaugural café we had the pleasure of discussing our Thyroid illnesses and their impact on our daily lives and social interactions that spawn poetry and other creative endeavours. During our sessions we have heard from two intimate groups of individuals with a variety of thyroid illnesses including; Hashimoto’s, Hypothyroidism and Graves Disease. We also heard about the creative process that has facilitated the attendees writing journeys. Through our struggles as a group, we were able to not only break ground with our writing but also expand on our creativity through developing our experiences, sentiments and reflections on living, learning and creating with a Thyroid Illness. Written by Sherina Mandalia Kamal Mandalia gave a talk at one of our Thyroid Trust Awareness events this May. During the event he spoke about his journey of having Papillary Thyroid Cancer. Kamal’s journey started in 2018. While coming back from holiday he noticed something didn’t feel right, of course at that time you don’t jump to the conclusion of cancer so he just thought it was simply dehydration. However he went to his GP just to be sure and had a blood test and urine test. At that time all tests came back fine - it is important to note that he did not experience any thyroid related symptoms. Wow! What a busy month we’ve had at The Thyroid Trust. Things have been moving so quickly we’ve only just got a chance to update you all on what’s been happening. Thanks to volunteer Nicky Mailey for kindly writing this report.
It’s a privilege to be able to join with The Thyroid Trust during International Thyroid Awareness Week, 25 - 31 May 2021.
I'd like to start on World Thyroid Day, by sharing two films– one a piece of work made relating to my condition, and the other a fun workshop demonstrating how to make fondant thyroid butterflies. Afterwards, on 7th June, I am looking forward to hosting a Creative Thyroid Cafe. On 25th May, World Thyroid Day, 12-1pm BST, we are holding our very first tweet chat, using the hashtag #ThyroidTrustChat.
A tweet chat is an opportunity to have an open discussion on Twitter at a set time around a series of questions put by the hosts. Everyone is welcome to join in, patients, friends, family and healthcare professionals alike. Our chat will be about thyroid disease, awareness raising and key issues that patients and physicians want to talk about. She was worried. She was in her early fifties and usually very active, being a keen walker and horse rider, but for some time she’d been feeling increasingly tired and had gained weight. It had got to the point where she’d had to plonk herself down on a stile after walking for just a quarter of a mile of a normal three-mile walk. She felt utterly drained - her legs were heavy; walking felt like wading through treacle. This feeling of sheer exhaustion was like nothing she’s experienced before, despite having worked previously as long-haul airline crew for years with the long hours and jet lag.
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