The APS Foundation of America

The APS Foundation of America, Inc. is the only United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services.

APS Often the Culprit Behind Heart Attack and Stroke in Younger Adults

The Antiphospholipid Antibody Syndrome Foundation of America, Inc. (APSFA) urges the public, as well as the medical community, to learn more about this rare disease. APS Awareness Month runs throughout June.

APS is an autoimmune disorder. Such illnesses occur when the body’s tissues are attacked by its own substances. In APS, the body recognizes certain components of blood or cell membranes as foreign substances and produces antibodies--a specialized protein the body uses to prevent infection--against them. It is the major cause of strokes in persons under 40 years old, blood clots (thrombosis) – which can lead to heart attack or stroke – vision disturbances and repeated, otherwise unexplainable miscarriages.

A heart attack generally occurs when a coronary artery clot blocks the supply of blood and oxygen to heart muscle. There are more than one million heart attack sufferers annually in the U.S.; about half of those stricken die. Unfortunately, many heart attack victims wait two hours or more after symptoms begin before they seek medical help. This delay can result in death or lasting heart damage.

A stroke, or "brain attack," occurs when blood circulation to the brain fails. Brain cells can die from decreased blood flow and the resulting lack of oxygen. There are two broad categories of stroke: those caused by a blockage of blood flow (called “ischemic” strokes) and those caused by bleeding. Ischemic strokes account for about 80 percent of all strokes. They usually are not fatal.

A transient ischemic attack, or TIA, is an ischemic stroke that occurs when the brain’s blood supply is interrupted briefly (10 minutes or less). There generally is no lasting damage, but recent research shows that about half of people who experience a TIA have a full-blown stroke within 24 hours.

APS is the leading cause of heart and brain attacks in people under 50. If you have a personal or family history of heart attack or stroke before age 50, ask your primary care physician to test you for APS. It requires only a simple blood test.

The APS Foundation of America is the only United States health agency dedicated specifically to bringing national awareness to APS. We are a volunteer-run, community-based, non-profit organization dedicated to spreading awareness and support to those with the disease.

Knowing more about APS can make all the difference. Get in the know and Get in the Flow!

Tina Pohlman posts a lot of great and interesting stuff on Facebook.com about having Hughes (they call it APS in America).

I have put a permanent link to their website on the right hand side of this blog.

Please do feel free to have a look at their site, they have a link back to here also!

I think I have Hughes Syndrome??!

Well, with my load of facts, website information print offs and a book on the subject that I had ordered online from Amazon.co.uk - Sticky Blood by Kay Thackray, I headed for my GP to get this problem sorted. I was sure that I had Hughes, APS, Sticky Blood, whatever you wanted to call it, I was sure that it was what I had and I wanted treating!! I had diagnosed myself, I knew what I wanted and it was with a brazen tone, that I told my GP that I had sorted out what was wrong with me!! I gave him all the literature, told him what blood tests I needed, what medication I could try and then I would know what was wrong, I would have my label of diagnosis and all would be well with the world.....(not so!)

My GP had never heard of the condition and looked it up on Wikipedia as I sat there!!! I was gobsmacked!! Why didn't he know what it was?? Hadn't he treated anyone with it before??? He didn't have a clue....he said that by going down the symptoms...he could tell that there were some matches with how I had explained how I felt and he was prepared to test my blood for the antibodies. The tests are very inexpensive apparently and he again looked up what blood tests he needed to order for me. He was fine about me diagnosing myself!!! Many GPs, I have heard, have not been so nice about being told how to do their job!! He was open to considering any option as we had had many conversations about my frustrations of not knowing what was wrong with me. He is a fab GP who did a lot of work in pain management at one of the Teaching Hospitals in Sheffield. He had explained that there were many people with unexplained pain symptoms and that although it was difficult to cope with not having a label for my problems, that he was more than happy to treat my symptoms and he believed them to be real, even if at times I thought that I was going mad!!

I had my blood tests and I told him that I was going to see one of the Specialists down at the London Bridge Hospital privately to discuss my diagnosis and treatment. He again was fine with this, at that time I was still waiting to see the neurologists in Sheffield, so no further referrals were due from him on the NHS until we knew what those guys thought.

I asked him if I could have a copy of my blood results when they were ready in a week or so and take them with me down to London, he was fine with this too. I had my tests done by the practice nurse that evening and I was ready to go down to London 9 days after that.

The day before my visit to London Bridge, I called in to the GP office and got the results of my tests for Hughes Syndrome which had been prepared for me in a sealed envelope to give to the specialist I was seeing in London the following day. I opened them up ....there were a few anomaly's with my bloods for general screening... but for having Hughes Syndrome - negative! Negative??? It can't be, I do have Hughes Syndrome...I know it???!!!

I was so upset about getting these negative results, but I went to the specialist down in London the next day. I was sure that their laboratory would test my blood and it would show that I had Hughes Syndrome, they would see that I definitely have it.....wouldn't they??

Hughes Support Forum London Meeting 23/6/09

NEXT LONDON MEETING IS Tuesday 23rd June 2009 The London Support Group monthly meeting VENUE has changed for this month and will be held from 5.30pm at Starbucks Cafe which is at the bottom of the escalator inside Waterloo Railway Station. Friends and family of Hughes Syndrome patients are also welcome to the meeting on Tuesday 23rd June 2009 from 5.30pm. Ann Sumra the Support Group Leader for London and will be there to welcome you from 5.30pm but is unable to be contacted by email at the moment due to computer problems. Ann apologises for the short notice and for any inconvenience this might cause.

Regards Hazel Edwards

Hazel sent me a message on facebook this morning, she wanted to post something on the blog, but I haven't left the followers tool on - I will change that....this is what she want to say anyway....

Wendy, I love your blog......I never realised the impact my support forum has on people's lives till I read something like your blog. I'm so glad that I decided to start it 3 years ago. I have spoken to so many people like yourself who have gone on to be diagnosed in the Lupus Clinic in London after finding no real medical help locally. Lupus and Hughes Syndrome seem to be closely linked although you can have one without the other. It is difficult to diagnose but the awareness campaign by the Hughes Syndrome Foundation is helping. Stories like yours make the work on the support forum so worthwhile especially when I realise how much difference it has made to other hughes sufferers lives. I did try to post this message on your blog but I needed an ID and had no idea how to get one. I hope you are keeping well and maybe we'll have another get together in Manchester Trafford centre again this summer. xx Hazel

Finding the Hughes Syndrome Foundation

During my investigations and research on the Internet, I came upon the HSF website straight away as THE website with all the answers and they had a forum for patients. I joined the forum even before I discussed the possibilities of having the condition with my GP because I just knew that all the symptoms of daily life with Hughes was how I had been feeling since July 2007. I realised that it was also how I had felt during 1996, 1997 and 1998 when I had thought that I was suffering from depression and that my degenerative disc condition was also playing up.

As soon as I entered the forum, I got a really warm welcome from Hazel, one of the moderators. I soon built a really good rapport with the people going on the forum on a daily basis, it was great to speak to people who completely understood my symptoms, how I felt, my frustrations, anxieties and fears.... they had all been there, some of them had horrific stories to tell about losing other halves to Hughes, multiple miscarriages, strokes, heart attacks and pulmonary embolisms. I felt as if my symptoms paled into insignificance compared to some of these people, as I was only experiencing the pain and disorientating symptoms, not the life threatening ones...yet! I was not made to feel like my pain was any the less though, I was welcome to discuss whatever was bothering me and to tell my story.

I found who I think will be a life long friend on the Hughes site, another moderator called Ally who lives just down the road from me in Barnsley. Since speaking on the forum, we have met up, our families have met up, we have talked over the phone and even had a day trip together to the Trafford Centre with a couple of the others from the Forum. There are always outings and meetings going on, they all went down to London for the Hughes Awareness Campaign at the start of June. June is APS Awareness month (it used to be September, but it got moved to coincide with the US one, it made sense).

She has listened to me during my frustrations with work and my husband not understanding me and I have supported her when she had to take early retirement on health grounds from being a District Nurse. Both of us have had to battle because of Hughes, it is that type of condition. It isn't well known, so no-one believes you have a disease, many of the symptoms are invisible - no-one believes how ill you are, it isn't easy to diagnose, tests can come back negative and doctors who don't understand the disease dismiss that you have the condition at all!! The treatment of thinning your blood is not offered generally until you have had a clotting incident - heart attack, PE or stroke, so you live in fear of this happening. Aspirin is advisable, but it may not protect you completely. However, starting to take a blood thinner is a life long commitment, once you start, you have to carry on and it needs checking all the time and the dosage altering depending on your food intake, mood or even time of the month!!! Anti malarials are another treatment - yes, you heard me right, anti-malarials!! They take about 6 months to get working in your system though, they have definitely made a difference to my daily headaches.

Nothing is easy with Hughes - getting a diagnosis, living with it, getting the treatment and living with the treatment....It is very difficult to get your family and loved ones to understand, let alone employers or acquaintances. It is very difficult to describe because no one day is like another. I may have a day which isn't too bad - I may have some pain, some dizziness and feel tired in the afternoon. I may have an awful day, when I just can't get out of bed because I have NO energy, my head is pounding and every bone in my body aches. Most days are somewhere in between. I have already told you about the Lupus symptoms and how I have to be careful in the sun, I also get the Hughes Syndrome symptoms which are the aches, temperatures, my hair falling out and black splinters in my nails. (A good reason to get gel acrylic put on them!). I also get the Sjorgrens Syndrome symptoms and these are dry eyes, dry mouth, chest pains and fluid in my ears. Many of the symptoms cross over for all of these auto-immune conditions. I think the most debilitating is the fatigue though, not just being tired, cannot get up and pick a discarded £20 left on the floor type tired!! - now that is tired, especially in Yorkshire!

They are a fantastic group of people at HSF and in recent months with "stuff" going on, I haven't been able to visit the site as often, although I do get the gossip from Ally on major events. It was the HSF who suggested that I speak to a specialist in Hughes Syndrome and get a referral to see one of the fabulous doctors at London Bridge Hospital. They also insisted that I start taking 75mg soluble aspirin daily to protect me. I got so much support and information from them and was accepted without being judged at all. I thank them enormously and always will.

You will find a link to their site on the right hand side of this blog as a permanent fixture, if you think that you may have Hughes, they will always be there to help and advise.

With all the information from these guys - the professionals, I just needed a quick word with the other professionals, starting with my GP!!

Sticky Blood!!

My Dad had always said that he had funny blood, during his time in the RAF during the war, he reckoned that they had to use a different stamp to all the others in the same line on his dog-tags...I am not sure what his blood type was, but he did have "Sticky Blood". Dad had had a couple of heart attacks, suffered with angina and then had a stroke, it was whilst he was getting his pace maker fitted that they discovered that his blood was positive for Sticky Blood. It was described to him as a sort of leukemia that makes his blood too thick and hence he got heart and stroke problems???? To be honest, I never investigated what Sticky Blood was at the time, Dad was a smoker and from what he was saying, this condition was similar to having high cholesterol or a lifestyle choice related problem....

My Dad lived down in Worcestershire, which is where I am from originally and towards the back end of his life when he was very ill, he relied heavily on my sisters (still living locally) to support him emotionally. They got involved with how he was and the medications he was taking...living over a 100 miles away, working nearly full time and with 2 small children, I was only able to see him a few times a year.

Dad often fell asleep when we were kids during the evenings, he suffered with headaches a lot, but I put it down to the stress of being the breadwinner and having 5 children and a wife to support.. My Mum died when I was 16, so the last 3 years that I was at home until I went to Uni, it was just me and Dad...on the whole we got on ok and he gave me loads of breathing space as I helped him in the house a lot. He had a few instances of getting nose bleeds that wouldn't stop bleeding, not feeling well enough to go places, sporadic aches and pains and other problems...I put it down to Dad's advancing years.

He had his first heart attack during the first week that I went to Uni!! He recovered quickly, carried on smoking and eating lard and hoped for the best... he then had other problems, including a stroke and COPD was diagnosed too. He carried on smoking and eating what he wanted, was diagnosed with diabetes, had another heart attack and was then put on warfarin and aspirin to thin his blood. The sticky blood diagnosis was never really investigated by anyone in the family, as I said, we put it down to Dad's lifestyle...

He died a horrible death in a nursing home that he never wanted to go into and he died with heart failure in the end, but by god he fought the good fight to the bitter end. I regret that I wasn't with him at the end, but I had said my goodbyes the day before he went.

When I was searching the Internet that Christmas of 2007 for my own diagnosis, I looked at the symptoms for Lupus, some of them matched, but not all of them, there was a hyperlink to Antiphospholipid Syndrome/Hughes Syndrome and I felt my symptoms were far more like this, then I discovered.... APS, Hughes, Antiphospholipid Syndrome...also known as Sticky Blood....thanks Dad, we got there in the end!!

I really do regret not doing more investigation into my Dad's Sticky Blood at the time, it would have given me more understanding of his symptoms, his fears and his pain. It would have also given me someone to talk to about my own symptoms...

That time when Dad said his arm hurt too much to hold my new born son and I was upset, even more upset when my Dad had completely forgotten that he had had a bad arm a week later!!?? Those transient aches and pains are a really bummer... and make you feel like you are going mad!!

I knew what my diagnosis was from reading the Internet that Christmas night...I just had to get a doctor to believed me now.....

MS Symptoms ??

Hello there

Well I thought that I would do the next few posts on how I started being ill, my varied symptoms and my journey to diagnosis and dealing with the daily issues and the psychological ramifications of having a chronic problem...a chronic problem that not many people have heard of!!

Well, back in July 2007 I had a bout of dreadful back pain. Back pain isn't something new to me, I prolapsed a disc when I was 21 putting a chicken in the oven and have had a "bad back" ever since. This period of back pain was the usual problems, but I was also absolutely tired to the point of falling asleep and having no energy to do anything. I had blinding headaches most of the time and I was getting numbness, pins and needles and pain in my arm joints and muscles as well as my legs (usual when I get sciatica). I was so racked with pain that it was keeping me awake in the night as I was worried what on earth was wrong with me, then I was falling asleep at other times as I was sooooo tired...I tried to go into work but I couldn't - just couldn't stand sitting in an office chair and all my other symptoms were driving me mad!! I had weakness on my right side, even in my right arm, the GP was perplexed as the damaged nerve in my back shouldn't affect my arm??? He referred me back to the orthopaedic guys at the hospital and I had to wait the usual time to see them and get referred for an MRi, then get that reviewed...all this took about 8 weeks...in the meantime I was a wreck!! I could not understand what all these other symptoms were about?? The summer was awful, I couldn't stand getting hot and kept in the shade most of the time, I was sweating all the time and ached all the time... Because I wasn't in the sun, if I did go in it..my skin burned like mad!??? It got to October and I was no further forward...I had a nerve root injection in my back to see if I needed another discectomy (previously had 2 done in 1993 and 2003). The nerve block didn't help my pain, so the surgeon told me that there was nothing he could do and referred me to pain clinic???? I was so worried and distraught that I couldn't stay in this amount of pain ongoing??? My GP referred me to a neurologist, again, back in the referral waiting game, it was January before an appointment with them came through....all the time I was in daily pain, all the time I didn't know what was wrong with me...my GP suspected Multiple Sclerosis at this point.... my bladder was weak, my right leg kept going from beneath me and I was getting pins and needles all over in sporadic episodes??? I felt dizzy at times and I was struggling to always find the words that I wanted...my 7 year old was finishing my sentences for me???? I was so scared and all the time I felt so ill... I spoke to a girl at work who suggested Lupus as a diagnosis, based on her Mum having it and it taking years for her to get her diagnosis??? I headed for the internet in search of some answers as I had never heard of lupus before???......

Christmas 2007 was spent on the laptop researching..then eureka!!! I had it!!!!

Thanks for reading..

Wendy

Lupus Symptoms

I am suffering in this heat today!!

We went to a "Fun Day" at Danny's nursery. They have it every year to celebrate the opening of the nursery, this is it's 5th year. It was a lot smaller than they have done it in recent years, but it was crammed with lots of activities and games for the kids to do. They soon got through a tenner in small change. I had to stand for a while and got talking to a neighbour to catch up. Before I knew it, she commented on me burning in the sun!!! My chest was bright red and I could feel my face starting to get puffy. We only stayed an hour, but as we got back to the car, I could feel my joints starting to hurt and where the sun had caught me, it was stinging!! Just a little bit of sun can make me feel so awful, I should have realised and sat in the shade, I didn't notice how exposed I was....

Warm weather was something that I always loved, but it saps what little energy I have now...I have definately changed into a winter person - but then again getting cold makes me feel awful too!!! Maybe spring/autumn are better for me really... I get so hot anyway as I feel that I constantly have a temperature, whatever the climate, but trying to get a shower, or do anything that takes some concentration or has be in an awkward position gets me sweating buckets!!! I really don't think the sweaty look is a good one, make up runs, dark rings of mascara, drips of sweat, wet hair....yukkie!!

I can feel that my ankles are swelling in this heat too and I took my rings off this morning after my shower as they were digging in! ouch! I just can't enjoy the sun any more, as I know that it isn't only today that I will suffer, but I will feel a bit more rubbish than usual for a few days yet...so difficult as being in the sun usually makes you feel good!!

Here is a piccie of a lady from the internet with the same rash that I can get...it really does look like I have caught the sun, but it doesn't peel like usual sunburn, there are little pimples under the skin beneath where it is red and it iches like an...itchy thing!!



For more information on lupus symptoms then visit:
The Lupus Site

Job Hunting!!!

Hello there,

I am sorry to have not added something yesterday, I was busy still job hunting.

There are not that many jobs being advertised that are strictly working from home, some are very risky, or want money up front or a plain not enough money!!

Working from home is good for me having Hughes Syndrome - this may sound a bit yukkie, but, having a shower, putting make-up on and being ready to face the business world in a suit completely exhausts me and takes me ages, so I try to avoid this until later in the day when I am a bit more with it!! Having dog breath and being in my joggies until lunchtime doesn't bother the cat but it would bother my boss if I turned up to work like that!! I still take the kids to school but then I am ready to start a working day at a computer and phone - just don't have me on webcam!!

Having a wireless laptop also means that I can lay down if my back is hurting and no-one knows if I am lying on the floor on the other end of the phone line!! I am able to take my medication when I am at home and I don't have to wait for colleagues to come back from their lunch before I take mine!! I don't have to get into any confrontations with colleagues either, which is always nice. All I have to do is my job!!

Nothing else to report... I will try and get some more Hughes Information posted over the weekend....

Love for now
Wendy x

Lacy webs on hands/arms/legs

I was just typing and noticed how bad my livedo is today - it isn't painful in itself, but it is a good indicator of how I am generally feeling. The more prominent the livedo, the more tired, fatigued and foggy I feel - I haven't looked at my knees for a few hours, they are going to be really bad if my hands are bad!!!
Here is an image of how livedo looks, it isn't painful, just a bit unsightly - especially in the summer months when you want to wear short sleeves!!!

I would say, apart from the pain issues of Hughes, the worst thing is the fatigue and the word finding problems. Not being able to think of the name for something and have your 4 year old finish your sentence or your 8 year old laugh, because you are in the middle of telling her off and no words will come out!!!! is very very upsetting, annoying and depressing. I am a sales person, talking is what I do best. I was examined by a neurologist the other week who was asking me the component parts of my watch - 3 different bits of it I just couldn't think of the words for them - winder, hands and buckle!!!

Many Hughes patients actually think that they are either going mad or are suffering from early on-set Alzheimer's - not funny!!! I do laugh about it, other wise I would cry, it gets embarrassing, I am much better at writing what I want to say sometimes - this blog is very therapeutic!!

Night!

Jobs!!!

I have a have had an email through about me getting a second interview for a job coming up in the Autumn!! Role play over the telephone which is fine...I do really need to get my head around the services that they offer and then I can get back into the swing of repeat telesales work. I have explained that I am unwell and that I am not able to work a full week, so they have suggested if I am successful, that I don't work monday mornings or friday afternoons and I am to take a 2 hour break in the middle of the day, it just needs me to be in telesales mode from 9am on Tuesdays, Wednesdays and Thursdays - I can give it a go...I just need to make sure that I go to bed early enough on these days and that I am super efficient at getting the kids off to school on time!!! I had better get the role plays done and them offer me the job first eh??

It will give me time during the week to do my study and play with the website/blog stuff that I am also doing...we will see. I have to watch another webinar for another role that I am looking at - doing admin/emails from home for a company who deal with claims on behalf of people....it starts at 1pm, so I had better establish link and see what that is about...I have to have things going on...otherwise I get very down and have too much time to think about being ill....

I didn't have a good night again last night sleepwise and was tired this morning, but better after a shower....I have to do something about my weight though - I gave up smoking but I am now addicted to food!!!!!! I need to speak to doctor about it as I am obviously taking in too many calories as I have difficulty burning them off as I don't move very much due to my mobility and pain issues.

We shall see eh??

Thanks for reading!

Video from Professor Hughes himself

The Prof explains about the terrible way that pregnancy is affected by having Hughes Syndrome primarily in these clips. Multiple miscarriages are often the time when women first get diagnosed with Hughes. I had 3 very early miscarriages over the years, but put them down to "one of those things" or "bad luck" or "my fault for working too hard".

When I got ill in 2007, it was only going back over my medical history - growing pains when I was little, teenage headaches and the multiple miscarriages, that I was able to tick more of the symptoms of Hughes. It is a complex condition, not ALL about losing babies, some men have it!! My Dad had it and it is very sad that I knew that he had it, but he or we didn't realise that many of his symptoms towards the back end of his life were Hughes related...I didn't realise that I had Hughes until after he died. He told us he had "sticky blood" - when my symptoms, lead me to investigate lupus, it wasn't an exact fit, I kept on investigating and I came up with Hughes - all of the symptoms fitted apart from having an actual heart attack or stroke...Hughes is also known as Sticky Blood!!!! well....blow me!!! that's why Dad used to fall asleep every evening and he always had odd pins and needles and storming headaches...he had 2 heart attacks and a stroke. The complication of his diagnosis was that he was a smoker and all his symptoms and problems were put down to that....We all know that smoking isn't good for us - I gave up last year when I got my diagnosis, but sometimes something else is going on in our bodies and it isn't all to do with smoking, although it doesn't help!!

Prof Hughes doesn't practice in the NHS any more, he can be seen privately at London Bridge Hospital, but the waiting list is very long to see him.

Regards

Been to see GP and done school run!

Phew!! As all Mum's know, the mornings between 7.30am and 8.30am have to be military precision or they just don't work!!! Dan wanted to wear a pair of "best" trousers for nursery...I started to argue, but then thought - "what the heck....he may get paint on them, but it will probably wash out and he better start getting them worn before he grows out of them!!" So Dan is the best dressed boy at nursery today, good for him... I have started to be a lot less het up about stuff like that. I suppose I have the theory now of....what will be, will be...why save a pair of trousers for "best" if that means only wearing them 3 times and him growing out of them before they have had his use out of them???

I had to see the GP for more prescriptions of pain relief, anti-inflamatories and paracetamol but also to sort out my sick notes. Got a new one for 8 weeks, so that takes me to nearly the end of July whilst I am trying to find a non-existent job that I can do and they will allow me to work from home. This blogging is keeping me going and I am learning all the time...I have a home study course to do as well which will keep my mind active - a CIW Foundation - which looks challenging - not properly started it yet, was advised by my tutor to get more web savvy and comfortable before diving in, so this is what I am doing!!!

I am seeing an old friend for lunch today, then it will be a quick rest before getting the kids!! I don't have time to be ill!!

I didnt sleep well again last night - lots of wanting to turn over, but not being able to without using the headboard to help me, waking myself up every time. Why can't I just lay in one position and sleep for a few hours??

Well, that is me for today.. I am still messing with the network marketing on this blog, changing bits and pieces, so that hopefully someone will come and view my ramblings one day!!

Speak soon!!!

An Introduction...

Hello, I am Wendy Ward and I am 39 years old, I am married and I have 2 children who are 8 and 4, a cat who is about 13 (lost count years ago) and I have Hughes Syndrome...

I wanted to write about having this condition, not to gain sympathy, but really to give people or the families of other sufferers an insight into how a Hughes sufferer feels and to give them a real understanding of how this dreadful disease can make someone feel. I also wanted to get a lot of things off my chest about my journey of diagnosis, about how it makes me feel as a mum, a wife and a person, about how I am judged and about how this awful condition affects everything that I do.

I have been diagnosed with having other auto-immune condition symptoms also, which include Lupus, Sjorgrens Syndrome and Raynaulds Syndrome. They are all connective tissue disorders, which are dealt with by a Rheumatologist.

I am lucky in that I have not had a stroke, heart attack or pulmonary embolism yet... these are what can happen to someone with Hughes Syndrome or to give it it's proper name - Antiphospholipid Syndrome. It is also shortened to APS, APLS or Sticky Blood! With so many names for the same condition, it is no wonder that it is sometimes difficult to get a diagnosis!

I am not a doctor and I am not here to guess about the medical aspects of having this condition, all I can do is give you my account of how the condition makes me feel and how I chug along life with the condition, knowing that there is no cure, that I am taking my medication and I have to just get on with it....

I have posted links to a couple of very good sites that you may want to visit for more information regarding the medical side and what support is available, for now... please keep reading as I get together relevant information and post about how things are going... thanks for reading.