Some of you, probably the majority of you, will have heard about Edna Kyrie of ‘Thyroid History’ fame website: http://www.thyroidhistory.net
It is with great sadness that I write to you to let you know that Edna died earlier this week, following serious digestive tract complications arising from her MS diagnosis. Her condition deteriorated a lot this past year, leading to a couple of long hospital stays. She died at home in her London flat with her main carer and friend, Kieron. Edna was in her mid to late forties.
In 1985, Edna was diagnosed with Multiple Sclerosis – a diagnosis she still questioned, right up to the day she passed away. In 1998 Edna also found out she had an under-active thyroid, it was this diagnosis that encouraged her to found the wonderful scientific web site ‘Thyroid Research’. She said: “I read a book on the thyroid and was amazed by how much could be affected by it, I decided to follow up the references at the back of the book, and so the project began.”Today, thyroidhistory.net holds over 1,200 abridged articles on the diagnosis and treatment of thyroid related illness, photocopied from books and journals in The British Library and scanned onto her computer at home. She said: “At one point I was spending £70 a week on photocopying. I just feel so passionately about this.” What has shocked Edna most, and what she talked about most animatedly, is the medical research by long-dead doctors that has been lost over the passage of time. Edna said “In the 1880s when they wrote about the thyroid they thought they’d found the elixir of youth. There is all this incredible work that had just been forgotten about.”The website sprang from a determination that the knowledge of thyroid function in many common illnesses is made available. Edna thought at the start that if she could just help one person it would be worth it, and she soon learned that she had helped many, many more than that – and will continue to help so many more in the future.
Edna’s health had declined in recent months and she was not getting to the British Library as much as she used to, but she continued adding to the website from a backlog of copied articles. She said “I worship The British Library and I feel I have this queue of long-dead doctors and physicians looking over my shoulder encouraging me,” and “This is what I have built my new life around – before all this happened I was a singer and a psychotherapist, I just can’t believe how much things have changed.”
Edna will be greatly missed, but her work lives on. I was fortunate enough to have met Edna and we have corresponded since. I first met her at Dr Skinner’s original IOP Hearing in London. Everybody found her to be a warm, kind, funny person who was totally dedicated to thyroid research and to make this available to all who will read it. I know that without her research, Thyroid Patient Advocacy would not be where we are today.
Edna and her work has been an inspiration to me personally. Thank you dear Edna. Details of the funeral will be posted as soon as possible.
Our condolences have been passed to Kieron Deahl, a very close and dear friend of Edna’s.
Thyroid Patient Advocate