I just picked this story up from the charity's Facebook page and it's worth sharing.
A big thank you to James Robinson who's running the Leeds Marathon in support of Kate, a family friend, who lost her sight due to giant cell arteritis.
Help James raise money to support people with PMR and GCA. Help us to raise awareness so that no-one loses their sight from this disease.
so glad you’ve seen this. ‘Kate’ is our gorgeous Mum. She’s actually called Margaret but at work there were already 2 other Margarets so she went by her Assistant Girl guiders name - Kate -confuses many! James’s wife worked with Mum for many years and they love her to bits. Their little girl calls het Granny Kate. X
I remember you....and when you first came on the forum. Your Mum sounds like an amazing woman who is also blessed with loving and caring daughters. Sounds like many people love her. How wonderful of James to do this, that is awesome. xo💞💞💞
A twist on that - my mother was Margaret Irene and was always known in England to family and friends as Rene. Then when she moved to Scotland and joined the WRVS, she became known as Margaret, "because that's your given name" someone dictated. This was after I had moved with my husband to Germany for a few years. When she died many years later, I and my cousin sat through a funeral service about a Margaret until I stood up to speak about my mother who I had always known as Rene. My cousin said to me afterwards that she had thought she was sitting in the wrong funeral!
What a lovely thing for James to do. And I do hope you are all doing well.
It was a similar sad event that got Prof Dasgupta into GCA - as a young rheumatologist a patient was sent to him but too late for anything to be done to save her sight and he decided he would do all he could to prevent unnecessary loss of sight due to GCA. He fought to get the 24 hour referrals pathway and get it to trialling - but the funds are often not there so people still aren't recognised as having GCA.
Ah now it's all fitting together. We need to get your mum's dreadful experience to lead to somethng useful, for somethig good to have come from it. James's efforts will help raise awareness and vital funds but this is a story that needs to reach surgeries and hospitals to change things. I'm on the case with you x
Don't think HU works like that unless people are following a feed - but hasn't that disappeared now? People tend to follow their Daily Digest and won;t see later replies to a thread unless they actively followed it the way DL and I do so we are notified of all replies - and even that doesn't cover every single reply in a mini internal thread of chat.
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