Thanet residents, Lorraine Williams, Victoria Stone, Sam Stokes, Dom and Jemma Channing and friends are marking International Thyroid Awareness Week, on May 30, with butterfly themed challenges around the Isle.
The thyroid is a butterfly shaped gland in the neck which controls every cell in your body and can cause a wide range of often misunderstood and debilitating symptoms when it goes wrong.
This year’s theme is Thyroid Champions – designed to encourage everyone who has thyroid disease to become a champion for more awareness, better understanding and improved support and care for thyroid patients.
Last year during their permitted exercise time during the lockdown Lorraine ran around Broadstairs on her own dressed as a butterfly and brother and sister Sam and Victoria ran 10K together. The three of them managed to raise an amazing £1,249 for The Thyroid Trust, a charity which works hard to make things better for people affected by the disease.
This year, providing the government restrictions on meeting up still allow it, the three will be joined by a few friends from Thanet and further afield to raise more awareness of thyroid disease and more much needed funds for the charity.
For the second year, the butterfly route in Thanet will spell out the word THYROID – going through Thanet Road, Harbour Street, York Gate, Rectory Road, Oscar Road, the site of the Inflatable Giraffe (which is on the map so counts as a place, whether or not it’s actually there) and to Dumpton Gap. Now that outdoor socialising is hopefully possible, the group will finish with a butterfly picnic on Ramsgate Main sands, just below the Ramsgate exit to King George VI park. Anyone affected by thyroid disease who’d like to join them for the picnic at 1pm is very welcome to come along and join the thyroid friends!
The Thyroid Trust continues to face a funding crisis, coming out of the Covid-19 pandemic.
Lorraine recently interviewed the author Michael Rosen (pictured below), who has hypothyroidism and described thyroid disease symptoms as “insidious”. Michael was very unwell with hypothyroidism from the late 60s but was not diagnosed until the mid 1980s. His experience is sadly not uncommon for hypothyroid patients, who often languish for many years with a range of debilitating symptoms that can be overlooked by medics and the people around them, including cognitive impairment, facial changes extreme weakness and a general slowing down – seriously blighting their lives. Thankfully once treated he got his old self back and has recently survived 47 days with Covid 19, making an astonishing recovery from that which has been widely reported and he has written about in his most recent book Many Different Kinds of Love.
The Thyroid Trust wants more people to know about their thyroid and how it can affect them, if it goes wrong. Thyroid disease is common, it can happen to anyone, at any age. Usually thyroid disease is easily treated, but for some people it can be very hard to manage and scientists don’t yet fully understand why that is. A more personalised approach to treatment and more research is desperately needed.
Lorraine and Victoria both have thyroid disease. Sam is Victoria’s brother, so has seen the effects of thyroid illness firsthand, as a close family member. The three met through Broadstairs based Houseproud Building Services’ boss, Michael Lambeth, who is Sam’s employer and has been an enthusiastic supporter of the new charity.
Victoria works for Thanet solicitors, Boys and Maughan, who she says have been very supportive and understanding of her condition. Jemma and Dom live in Margate and Jemma works for the Beaney in Canterbury. They too have family members with thyroid problems.
Lorraine is the Director of The Thyroid Trust which is still very new, having only completed registration with the charity commission in May 2019. Although it is a national charity, she is able to work from home in Broadstairs most of the time. She says “thyroid disease is common and usually quite easy to treat, but around 10% of patients can have a really hard time with it and I was one of those people, so I am absolutely determined to improve standards of care, access to treatment options and general awareness, to help others with thyroid disease feel less alone and be as well as they can be.”
The Thyroid Trust campaigns for greater awareness and understanding, improved standards of care, access to treatment options that are known to be effective, more research and better quality information and support for thyroid patients. They have been influential in persuading NHS England to revise prescribing guidance for a specialist treatment for hypothyroidism, liothyronine,T3, and are continuing to battle for improved access to this treatment for those that need it. They have a YouTube channel which now has a collection of 16 videos all made by volunteers, featuring leading clinicians and patient interviews.
The charity has partnered literary Fahmidan Journal which will be publishing a special issue of poetry on World Thyroid Day, including a new poem from Michael Rosen about his hypothyroidism. The butterfly picnic will include a chance to hear some of the poems.
If anyone would like to support the runners or do something themselves for International Thyroid Awareness Week please visit the charity’s website.
This year for the first time there is even a special Thyroid Trust Thyroid Champions Facebook profile frame you can use to show your support on Facebook.