The sticky blood Explained relaunch - Hughes Syndrome A...

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The sticky blood Explained relaunch

KayPryszlak profile image
16 Replies

Hello everyone, I haven’t been on here much I’m sorry to say. I tend to read Facebook posts as it is so easy but I do need to visit here too. I will make more effort! I forget my password every time!

I’m Kay who wrote the Sticky Blood books and on October 12th Prof Hughes and I are in conversation at the book launch of my updated version of Sticky Blood Explained. Afterwards I am signing books and there is a glass of wine or a soft drink plus canapés included. There is also a raffle with great prizes drawn on the night.

All proceeds of the raffle, the event tickets and the book sales go to GHIC. I have donated 100 books to the charity so that they can make as much money as possible.

The event is open to all not just patients. It is to improve awareness in general. Prof and I will be doing a question and answer session too so if you really need an answer to something this is a cheap way to ask the man himself.

I hope to meet a few of you there. Xxxx

eventbrite.com/e/book-launc...

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KayPryszlak profile image
KayPryszlak
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16 Replies
MaryF profile image
MaryFAdministrator

Hi, Kay, great to see you back on here, it goes without saying that I will be up at the event on the day and helping before hand, hopefully a few old faces and a few new ones will appear. It was great seeing so many old friends at the recent Patient's Meeting, and also putting names to faces of new people, some who are on here. I will pin the post for you. I can't wait to read the new book!

Mary F

KayPryszlak profile image
KayPryszlak in reply toMaryF

The new book is pretty much the old book but updated a bit to bring it up to date with current thinking. The book was getting a bit behind the times. It took a lot more effort than I thought to make it 2018 friendly! I loved patients day, I love to try to help people and questions that seemed really easy to me were obviously not so easy for the newly diagnosed and frightened people I spoke to. I look forward to seeing you again Mary. I’m also looking forward to meeting others and hopefully giving them some advice that makes their life better. Xx

KayPryszlak profile image
KayPryszlak in reply toKayPryszlak

One last thing. Can I save my log in so I stay logged in on my I pad? Technical stuff is not my thing lol

MaryF profile image
MaryFAdministrator in reply toKayPryszlak

Well, I can on my chrome book, but just in case it does not work, do write your password down somewhere. However you should be able to do that, I don't have an Ipad, so not may area of expertise. MaryF

daisyd profile image
daisyd

I have got your previous book, absolutely brilliant a really good insight into what it’s like to have sticky blood, thank you so much for writing it, hope I will be able to come to the event,it will be really excellent I am sure

Thanks again

GinaD profile image
GinaD

I'd love to come, but I'm across the pond. Your book's first incarnation was so helpful to me!

Gina in West Virginia

Feedee profile image
Feedee

I would love to come but I'm away that weekend. Where can I get a copy of the new book?

KayPryszlak profile image
KayPryszlak in reply toFeedee

Hi it will be for sale on Amazon and from most bookshops to order xx

baba profile image
baba

I hope you have invited Kersten, aka Lure2, she has been recommending your book on here for a long time.

KayPryszlak profile image
KayPryszlak in reply tobaba

I would love to meet Kerstin x

Lure2 profile image
Lure2

Hi Kay,

Baba is right. I have recommended your book to many APS-patients on our site for several years. Also as an admin for some time.

So nice to be able to "talk" to you. I have your two books and they have meant a lot to me. I hope you will have a fine day and sell a lot of your fantastic books.

I live in Sweden and I have primary APS, triple positive with persistant high titres. Diagnosed with TIAs in 2002 and now pulmonell hypertension and 2 leaking heartvalves.

Warfarin (started in 2012) has been my lifesaver and I selftest often to keep my INR in range. I am 74 years of age and I feel quite ok with good Specialists around me and I try to exercise as much as possible and eat healthy food that make me feel good.

Have a wonderful day!

Kerstin in Stockholm

KellyInTexas profile image
KellyInTexasAdministrator in reply toLure2

Kerstin, you have to go!

jetjetjet profile image
jetjetjet in reply toLure2

Hay my Swedish Buddy -- wouldn't it be great for you to fly there and see Kay --Who knows maybe Kay will be in Sweden some time !!! You could dicuss the triple positive aspects of our problem and i would be interested in that also . Best to you my long time friend !!

Lure2 profile image
Lure2 in reply tojetjetjet

Hi Jim,

I would love to come but I have decided that I am not going to fly outside Sweden anymore.

It is not as an environment cause but as a medical reason. I want to be close to my hospital if I need help.

I appreciate your thoughts Jim. I will get back to you.

Kerstin

jetjetjet profile image
jetjetjet in reply toLure2

Hugs - I can understand what your meaningful thoughts on this are . will be waiting your message . Casey and I

KayPryszlak profile image
KayPryszlak

Kerstin, thank you so much for recommending the book to people. I don’t know whether people know that I don’t take any money at all from sales of my books it all goes to GHIC or the other APS Charity. Knowing you are 74 gives me a lot of hope for a long life! I’m now 56. I would love to meet you xx

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