Patient forum london

Hi all,

I attended the patient forum in London on 16th. I would just like to thank everyone involved. It was really well organised and extremely informative. It was so lovely to also meet some of the members of this forum. Amie, it was a delight to meet and spend some time with you after reading so many of your posts, I know we will keep in touch. Maz, what a shock! - you are wonderful and a breath of fresh air, Kentuckyrain, I wish you all the luck in the world with your daughter, I can't stop thinking about you. x Violet, I didn't ask if you are on the forum, with everyone having different pen names, I felt we all should have had our forum name on our cards, but it was lovely to meet you and your husband, he is obviously a great support to you.

Thank you to MPD Voice and all the medics who gave up their time to be with us.

Judy x

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  • Yes, I agree, it was a very informative day.

    I only wish we had had a bit more 'chatting time' in our smaller groups as although the question/answer session was really useful I would have liked the chance to 'chat' to other ET people in that time as well. My hubby said the 'Family' group was really good and enabled him to talk to other family members about how they feel.

  • Hi Piggie50, it was lovely to meet you and Aime, sorry I was a bit of a shock to you, I have that effect on a lot of people, I'm not sure if it's just the purple hair, but thank you for such nice comments. It was a great day and so well attended, I hope everyone who came along found it informative and enjoyed it. I certainly enjoyed seeing people I know from previous forums and meeting new people, it's always nice to be able to put a face to a name. It's also so encouraging and nice to see and hear the support that we all have for one another. Let's hope it's not too long until we all meet again in person, but at least we can keep in touch on here. Best wishes, Maz.

  • Hi Judy, Iain and everyone else, It was great to meet you and the others I managed to catch up with - the day went past in a whirlwind and I was only sorry and apologise for not managing to find and speak to everyone from the forum.

    I would like to thank Maz and her crew for a fantastic, friendly and informative day. Please pass on my gratitude to all the medics who gave up their time for us on the Saturday - I have had questions answered and also found some more to ask but I am so grateful that we get the opportunity to understand more about our conditions and are not left in ignorance and anxiety.

    Maz - I love your hair! Judy & Iain - thank you for your company - it was great not to be on my own, I got home at 2000 hours last night - but it was all worth it.

    Best wishes to you All - love Aime (Lucy) xx

  • Yes, it was both very informative and somehow reassuring. The organizers did a great job- many thanks to all of them.

    To be able to 'hobnob' with a couple of Professors was a bit out of the ordinary and it was great to be able to speak with Prof Gotlieb, Prof Harrison and Doc Benson about some concerns re my 2 children, and have those questions 'put to bed'. It was also good to re-visit SOAS, my old college after nearly 30 years!

  • Hi everyone,

    Well, I feel quite robbed having missed such a great day. I'm so glad that it was such a fantastic success and so helpful to all.

    Here's hoping there's another forum soon when I can catch up, and meanwhile I'll look forward to the next patient day........( Claire's final fitting for her dress was lovely, and the dress stunning so I guess was worth missing the day in London - just! I'm starting to have sleepless nights worrying now if all will go well. Hey ho.)

    Having got a long email from dear Violet telling me all about the day, I have a feeling that we're missing out big time here in the frozen north. I asked my haematologist if either he or one of his colleagues could attend, but when I asked him last week if anyone from the dept was going, he looked completely blank. Talk about head buried in sand syndrome. Grrrrrr. Hope you're all well.

    Louise

    x

  • Hi All,

    Great to meet some of you at the patient day, i hope there's one on next year as i would like to make it an annual thing. I found it very informative and even though there's not much info out there on pediatric ET i got a lot of hope from hearing about what new drugs are being tested. I can only imagine what might come in my daughters lifetime.

    My daughters haem was afraid it would scare me and i think its had the opposite effect, everyone was positive for the future

  • Delighted to hear that you found it positive. I am in Dublin but it is my husband that has ET. That was our second living with mpns day and we go because it is so positive. I realize you are more interested in meeting young people who you can talk too. But if you ever want to talk let us know. Hubby was diagnosed exactly 10 years ago this month at the age of 46.

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