Now what...

[Cindy-Evans]

Hiya.

I've been part of the group for a while reading what everyone's up to (yes I know but not a stalker I promise Tudor use to always admit I have issues) So I'm turning 40. I'm FH and currently on Apheresis every other week (although they want to change to weekly again). I'm suppose to be having a stress echo but that department has no doctors available to do the test I take so many tablets I rattle and I work full time so hate it when it messes up my head - struggle to think clearly some times hehehehe although maybe that's just me being ditsy anyway keep posting I pick up loads of tips on things to try

[Wyvon]

Good morning Cindy. What an inspiration you are. You have so much you could complain about but sound so upbeat and positive. Love your two smiley faces and sympathise for the reason for your misery one. Cannot believe there is no way you can get the stress echo test, if that is what you need. Please let us all know how you get on. Are you coming to the HEART UK AGM in Hatfield 16th - 18th September. You could meet the experts and other FH members, some of whom may also be on apheresis. I have tried to go every year and always learn something new.

Hope you keep reporting on the forum, now you've posted once.

[sandybrown in reply to Wyvon]

I am planning to attend the annual conference this year, last year I learned a lot from the conference. At the moment no travel grant!

If I have enough money closer to the time I an planning to attend.

[Wyvon in reply to sandybrown]

So that will be two patients (hopefully). Let's hope this year there will be many more.

[Cindy-Evans in reply to Wyvon]

Hiya. Could you send me a link about the heat UK AGM

Thanks

[sandybrown in reply to Cindy-Evans]

Here you go:

heartuk.org.uk/news-and-eve...

when you are there, bottom left, register now!

[Wyvon in reply to Cindy-Evans]

<heartuk.org.uk>

[Wyvon]

OOOps - missed the AGM bit but see Bala has given you the correct link. Maybe all patients going could arrange to meet during one of the breaks.

[sandybrown in reply to Wyvon]

Are you planning to attend the three days or only one day just Thursday?

Had a look at the programme, only Thursday sees very interesting.

Cholesterol charity will be discussing diabetic issues as well, very good.

[Wyvon]

I am going to stay over until the Friday because I thought these sounded interesting: 11:30 - 12:00

SATURATED FAT : THE DEVIL OR THE MISUNDERSTOOD NUTRIENT

Recent media coverage has given saturated fat a clean bill of health, but is this view supported by the science; this presentation will review the evidence and provide recommendations for what should be told to the public.

Dr Janice Harland

Nutritionist

HarlandHall Associates, Cirencester, UK

12:00 - 12:05 Discussion

12:05 - 12:35

BLOOD PRESSURE

How raised blood pressure is managed in primary care, with references to NICE guidelines and the latest research.

Dr Terry McCormack

GP, Whitby Group Practice, Spring Vale Medical Centre, Whitby, North Yorkshire, UK

12:35 - 12:40 Discussion

12:40 - 13:10

A PATIENTS PERSPECTIVE

Ms Sonya Brennan

Patient, London, UK

- See more at: heartuk.org.uk/conference/p....

Must be sure to look out for each other. The colour of the badges will give us a clue.

[sandybrown in reply to Wyvon]

Thanks.

Are we allowed to attend Medical and Scientific Programme? Thursday AM programme looks very interesting!

[Wyvon]

As delegates I am 99% sure we are allowed to attend any of the presentations/lectures but I find the M&S are above my comprehension much of the time and the P&HC more pitched at my level of understanding.

[Hidden]

Hi Cindy, if you're on apheresis I presume that means you've got homozygous FH, so it's disgusting that you can't get a stress echo test - you should complain to your MP, the local paper or whoever you can. It's people like you who need the help of the NHS the most.

[Cindy-Evans in reply to Hidden]

I know they try their best and sometimes it's just frustrating! Got a date now so all sorted thanks for suggestions.

[sandybrown in reply to Cindy-Evans]

All the best. Food intake control and regular exercise can help towards a healthy life style!