Newly diagnosed and saying hi

[Positiveandhopeful]

I just wanted to say hi to my fellow sufferers. I have recently been diagnosed with APS and have been surprised by how little information there appears to be around the condition. I'm glad I have found this site because the wealth of information it contains is amazing. Reading the experiences of other sufferers is a great foundation and starting point for learning about this condition because thus far I have felt very much unsupported. It has also been very interesting reading the stories of female sufferers who have also been diagnosed with the condition and who also have Gynaecological issues because I too have a fibroid and am now beginning to wonder if there is some sort of corallation between the two?

[MaryF Administrator]

Hi and welcome, firstly where are you located? Secondly, if in the UK we have a great link to recommended specialists which keeps yourself and GP up to date with the best sort of care. Thirdly, do have a look around the actual charity website which we are linked to as the wealth of information on there is also very good, including books to read etc, and all aspects of advice you might need. MaryF

[Positiveandhopeful in reply to MaryF]

Hi MaryF

I'm located in the UK, Liverpool. This is something that I am finding is that my GP appears to know very little if nothing about the condition, but that aside they are very good and supportive so I would be reluctant to leave the surgery for the sake of finding a GP who has knowledge of the condition. I have been looking at the Hughes Syndrome website over the weekend and it contains some really useful information. Looking forward to exchanges experience with other sufferers.

[MaryF Administrator in reply to Positiveandhopeful]

Hi if you get your GP to refer you to our list and give them the charity website for them to look at, managing your care will be easier for them.... hughes-syndrome.org/self-he...

MaryF

[Positiveandhopeful in reply to MaryF]

Thank you MaryF, today I had a conversation with my GP and asked if anyone in the practice has any knowledge of APS, to which he honestly replied no, but gave a commitement to ensuring that GP's at the practice at least have an understanding of the condition. I have also made them aware of the Hughes Syndrome Foundation website.

[Lure2]

Hi and most welcome to our site where we all have APS!

I am sorry to say but through the years we have found that we need an APS-Specialist. Good that you live in England as it can be a Specialist not too far away from your home perhaps. So very few doctors know this illness. An APS-Specialist and a diagnose are the two most important things and also to learn about APS.

I live in Sweden and I know of only one more with this illness in Stockholm and she took her family and got to see prof Graham Hughes to get a proper diagnose and treatment. She saw him twice and stayed for 1 week.

I think you should read "Sticky Blood Explained" by Kay Thackray. It is a couple of years now since she wrote the book but the symptoms are the same and she has APS and she wrotes about the different symptoms of APS. It is a real good book to understand this illness. She has also written "More Sticky Blood" .

Best wishes to you and I hope you stay with us here. You will learn a lot of all our fantastic members.

Kerstin in Stockholm

[Positiveandhopeful in reply to Lure2]

Thank you Lure2. The problem with specialist in the UK is that they are very few and far between. I was under one hospital, which I later found out had a specialist in the condition based there, but I was not happen with my care so asked to be transferred to another hospital. I'm not sure if the consultant at my current hospital in a specialist in the condition, but I will ask at my next appointment. Thank you for the recommendation of the book to read, which I intend to invest in.

I am looking forward to learning more about this condition from the forums members.

Thank you again

Lavern in Liverpool

[Manofmendip]

Hi Lavern and welcome.

My friend and colleague have given you some good advice, which i agree with.

Dave

[bevjane74]

Hi Lavern

Being diagnosed with aps is an absolute minefield but I found this page a massive support with lots of easy to read and understand information and everyone here is so helpful so if you're ever confused about anything the best place to be is here.

I too have gynea problems I personally feel they are connected but the connection hasn't been made in the medical circles yet maybe in years to come who knows,

Welcome to the page

Beverley (Newcastle UK)

[Positiveandhopeful in reply to bevjane74]

Hi bevjane74

Totally agree, an APS diagnosis is an absolute minefield, but hopefully being a member of this site will make it easier to navigate.

Thank you for the welcome.

Regards

Lavern

[TTrch]

I've been diagnosed with APS in February this year, following an unprovoked DVT and multiple PE's in both lungs in October (the previous year). Since starting Warfarin I've noticed excessive bleeding every month. Went to my local GP who ordered an ultrasound and refered me to a gynecologist who did a D&C, found numerous polyps and inserted a Mirena IUD. This has been fantastic. Solved my issues.

My GP, gynecologist and haematology specialist I'm seeing (in Australia) all agree that any gynae issues are a separate issue to the APS. Probably due to getting older.

Regards

Tonia in Australia