When you found out you has aps where did you go for support and info?

[paddyandlin]

The reason I am asking is looking to see how we can improve the site for you members

[MaryF Administrator]

Hi there Paddy. Well in my own case. I have had a mixture of good and bad luck. Firstly, as per my own personal blog, when we first all started on here. I had some very obvious signs in childhood of things which did not add up, also terrible migraines, reaction to contraceptive pill, pericarditis etc. However it was my own determination as.... both my sisters had serious blood clots in legs and lungs when pregnant, also my eldest sister 7 miscarriages.

When I was pregnant... I wondered if myself next. Due to attitude of (imminent retirement of consultant obstetrician 1989), despite BEING IN ST THOMAS'! where the current research was groundbreaking, they told me to perhaps run along and go home. I admitted myself a couple of weeks later, with sudden onset of pain in my calves, to have clots found in both my legs. However nobody ever said I had APS, or my sisters, we all test negative. Two subsequent pregnancies on fragmin... so the luck here, thank heavens that it was St Thomas' I turned to, also i did have a very good and thorough GP at the time.

I arrived at the point of finding out what the hell I had, by endless research, articles in the paper, and research on my other diseases! All of them once I had worked them out and gone to GP, then confirmed by specialist, However I had to see Professor Hughes himself in last three years, to get my seronegative diagnosis, so....that has set the ball rolling to get me back into St Thomas... in the middle of appointments now. Due to being sidelined by a particularly unfortunate house move and having no choice of GP practice, my care and that of the children for everything greatly compromised. However all things on the mend now care wise. After long and stressful fight for basic care for even my children for childhood ailments.

However I have just recently worked out I have a new thing, (hypothyroid), which made me hot foot to the UK resident expert of my choice... but again I had to work that one out. So now have four things, but this new one is driving the other things mad... so hopefully if I calm that down, things will be better. Luckily my awful sense of humour has NOT been dented!

So, thank heavens for libraries, internet and an intelligent group of people to engage with, including of course this site. Mary F

[CindyCB]

I use a variety of different forums for my various problems (loads of 'em!) and I find the most helpful ones have different sections for certain enquires so you know where to look on specific topics to see if someone has already asked the same question or had the same symptoms/side effects as you.

[Hidden]

When I was diagnosed at my local hospital, they gave me a leaflet on APS which told the patient nothing !!! Then the consultant told me to take a low dose Aspirin everyday and that was it !!!! I came out of my local hospital dumb struck !!!! Nothing ! No advice, No contacts-I felt lost and frightened-never felt so lost and vague in my life. So worried that as soon as I got home I went onto the computer and looked up APS. This made me feel worse. Because I knew nothing about the condition, I tried to learn and research which I did and came across Professor Hughes name and the Hospital. I wrote a long letter explaining how I felt and what my Gp had diagnosed me with over the last thirty years and he wrote to me and suggested I go and see him which I did. After seeing Prof Hughes I was passed onto a Consultant at St Thomas Hospital who has been fantastic and I still travel to London for appointments. My Gp is not aware of APS so I don't really have a choice. Because it became expensive seeing the consultant privately plus the cost of the travel, I am now on the NHS to see the consultant and do so frequently. I now feel safe and am being looked after by a fantastic and very caring Consultant at St Thomas Hospital.

[jessielou]

Hi Paddy

In the first instance I searched uk sites and found Lupus forum, then Hughes Syndrome Foundation, then through Haze`s Aps forum to here. I also use Fma uk.

I find all of the forums really useful and very supportive. All have a search facility too so users can find related threads.

I would be lost without them and it helps to share.

Hope you well

Take care gentle hugs love Sheena xxxxxxxxxxx

[Hidden]

The Forum each year at St Thomas Hospital is good and interesting and well worth attending. This website is great because we can all share our concerns and views and give advise. Other peoples experiences and symptoms are also educating and interesting to read. I personally have not found any information available at my local hospital or my Gps. Because of the lack of knowledge and awareness on APS where I live I wait until I see my consultant at St Thomas - Its frustrating but well worth getting the answers from the expert !! Also the online nurse- Angie is good if you are concerned about something. The book 'Sticky Blood' is good reading also-this was my first book that I bought and found it to be well written and contained no 'Medical Jargon'. !!!!

[daisyd]

Hi I went on the Hughes syndrome foundation site Brilliant as is this one

I also go on the web site for rare syndromes. NORD team inspire

I was told at the end of an appointment that ~I had Sneddons syndrome along with Hughes syndrome, I went home and looked it up on the computer, I felt like I had beed run over by a bus.

The next thing I did was try to go on the Sneddons web site, although it has loads of information the person who runs has had some ? illness in the family so their is no one to talk to.

I found the Nord web site for rare syndromes There amongst other terrible syndromes II managed to speak to others with the same condition about 6 of us

we don't write very often but it has made loads of difference being able to speak with others with the same condition, but also to realise how awful other syndrome can be,

Love Karen

xx

[daisyd]

Sorry also get Email from the Aplsuk. I don't think its morbid going on these sites its lovely to know you can write if you need answers or get something off your chest with others who really understand

Love Karen xx

[jetjetjet]

hi paddy at first , i was told i had lupus anti coagulante [ spelling ? ] i knew nothing ,so i bought books on lupus ?. then begain to start to really understand just what was really going on. got boook on a.p.s. the total picture thn begain to make more sence , then heard over a period of time of this site . then things really begain to come into focus, realized that i wasnt alone , a freak , no mental problems [ of course others may think differntly ] many questions answered, many thoughts answered, compasion in abundence. i truly believe ,that everybody should have a site like this with any problem they may face in life. have to go back recently to tashs blog that says it all about just what we face ,endure,and of no choice of our own live with, but we all are fighters. its just that that makes us special. in this journey we call life. well my one finger is getting tired. bfn jet

[Gadgets]

Hi Paddy you naughty boy!

I was told during my first visit to St Thomas about the hughes syndrome forum online support group. I got lots of info from that.

This is the second site that I signed up to.

Cheers

Garry

[paddyandlin in reply to Gadgets]

I did not do anything honest well not that i can remember mate lol

thansk

paddy

[Hidden]

Hi

I may buck the trend somewhat - but that's nothing new!

I was diagnosed by the one-and-only Prof Hughes and took advice from him and Lupus Consultant and that's it. I was diagnosed very late in 1999 and the advice was to rest so I ignored that and went about my daily life - I completely quit alcohol (I was 19) but other than that carried on regardless!

I refused to join help groups or forums because I didn't want friend s that I only had an illness in common with... I was a real fighter.

I have chilled a bit now but this is still the first forum I have ever been a part of.

In fact, I have to say that I still write questions down and tke them to clinics to get answers rather than look elsewhere - especially the internet which can be so misleading if you get the wrong site.

Hope that helps/makes sense.

Tx

[MaryF Administrator in reply to Hidden]

Me too, this is my first forum! Mf

[paddyandlin]

Hi All

Thank you for answering this question it is really good to hear so many stories and ideas and challenges as well as seeing that the support that is out there does work in what ever form you want to take it and i am a firm believeer in that it does not matter where your from who you are its about getting the support and answers that is right for you.

I hope other people will give ther story of where they came from to end up here but the more we know the better support we can give and enable us all to support each oth, to those that have started using a forum whether it is this one or another i hope you get what your looking for.

tasch and Mary its not wrong to ask a doc rather than a support group and there are a lot of them about but i hope being on here with us lot has add to your view we may not have all the answer but just to vent with out causeing offence i found helps

Cheers

Paddy

[MaryF Administrator in reply to paddyandlin]

Hello, I have found it more than useful and supportive being on here, for myself, wider relatives and indeed my children. Having researched for years and come across the Hughes Syndrome Foundation... with this now as well, is more than impressive. Community whether in the flesh or on here is invaluable! MF x

[marycath]

Hi Paddy,

Because I had severe cardiovascular events over many years, with no answers in my part of Aussie, I checked online re lupus, (after getting all my medical history from medical-legal officer in 2006), on The Lupus Message Board, and an Administrator told me about APS, and the Hughes Syndrome site, so I joined through Hazel, finding out lots of information (still do), and buying most of Prof Hughes' books, as well as The Lupus Book, and many others. I went to a new GP as none had helped, and had tests showing positive for ANA and APS in start of 2007. No specialists - 4 rheumatologists, cardiac, renal, endocrinologists, dermatologists, and many others - wanted to know. Late 2007 one put me on plaquinel, but didn't want to help. I'd joined the Foundation very early, also APSLUK, Aust Lupus Association, Scleroderma also, a great American group Teabags, the American APS group. The most helpful has been the Hughes Syndrome Forum, and using the Sticky Blood books-Kay Thackray and Talking About Lupus-Triona Holden/Dr Hughes I'd found in local library. At start of last year I'd heard of a Dutch eye specialist here, and went to see him as mine of years had helped in no way, and I asked if he knew APS. He said yes, that in Holland he had diagnosed retinal and catastrophic APS at University hospital-gave me copies of his papers. He lasered my eye brilliantly, and gave me the referral I wanted to London Bridge Hospital. As many of you know, I went to London in May last year, with positive d/x APS given, and Plavix suggested as medication, and was given the name of a Sydney reheumatologist, whom I've flown down to see 3 times, but still no local support except eye specialist, and hard to have to fax down south, still looking for a sensible GP, as still have many problems. Prof Hughes had said to keep in contact by email, so I did and will

marycath/marymac

[Herb]

The doctors and nurses at the Freeman Hospital gave me a lot of support.

[Hidden]

As an American, when diagnosed I made the mistake of first joining the APSFA forum. After a very bad experience there I found this wonderful group and have been here ever since. My hematologist and neurologist's nurse practitioner have also been wonderful and supportive as well.

[Lesley_D]

Hi, Well I got my Dx in Nov last year, with "well at least we know what it is" from my chest doctor - who said that explains why you have such poor lung function you have probably had pe's all your life and been lucky, but it's left you with permanent lung damage as my lungs currently work at 37% - Then he said that means lifelong warfarin and maybe a hematologist might help. That was my help and advice ..... I searched the internet for a forum as I hope to do a skydive this year to raise awareness for the disease, and wanted to know if there was a registered charity, and I found you guys! and what a lifesaver you have all been!

Thank you all

Lesley

[traceylou]

I am still going to London and all everyone does is talk in Doctors jargon