I've had this disease diagnosis for 16 years. On a scale of 1 to 10 how serious do you think this disease is?

[jean48]

[MaryF Administrator]

Hello there, I think we all operate to our own scales.. I think yes it is a serious disease but far more serious if not diagnosed or managed properly. My own scale would have said 9 a couple of years ago for myself and my young daughter, but since we have been assessed and given correct medication guidelines I feel that number can drop down the scale. There is no ignoring what we have. I try to live my life without ignoring it, but without having it dominate things, some balance in the middle. Best wishes to you. Mary F x

[jean48]

Thanks Mary. I've had this disease for such along time that sometimes I begin to think it's no big deal. I've had my physical problems believe me. My family doctor reminded me the other day the seriousness of this disease.

Jean

[lucky1]

This disease is fatal for many people not living past their first major clotting event. Makes this a very dangerous disease. Usually there is no warning before the clotting event, or other indicators are not put together for a diagnosis.

Having said that if one survives the initial clot and gets anti-coagulated correctly then the dangers of this disease are not as high.

That risk will go up if the management is not managed correctly.

Personally I had a trifecta in the space of a week 12 and a half years ago. An arterial clot at the back of the head complicated with a bleed (result massive stroke) next a large DVT (ankle to knee left leg) and for good measure a PE (pulmonary embolism or clot on the lung). Any one of those could have killed me. hence the nick I use as I beat the odds by surviving.

Being managed correctly I live a normal life working 4 days a week with wednesdays off.

For those interested my stroke story is at tbihome.org/members/peter/

lucky1

[jean48 in reply to lucky1]

Your right it is serious. I could have died after my son was born early weighing 1 lb. 5 ounces. I remember my doctor telling my husband how lucky he was that I didn't have a stroke.

[MaryF Administrator in reply to lucky1]

Very interesting reading, very reader friendly as well, what a trouper! Mary F x

[jetjetjet]

ni Jean- every one is different , alot of different symtoms and exstent of problems 2009 nearly killed me ,been in e.r. a number of times since, loss of vision , skin poblems etc. etc. etc.. i woulbnt take it to lightly. asyou never know when it will raze its ugly head and act up ?? glad you dont have major issues at this time ----------------------- jet

[jean48 in reply to jetjetjet]

I know it's serious but just interested what everyone else thinks. After having it for so long I guess I've gotten used to it. That's probably not a good thing

[daisyd]

Very serious, made worse by the lack of knowledge by the medical profession

Karen xx

Thank goodness for my Heart attack !

[pumpkincake in reply to daisyd]

Yes... I fully agree with daisyd. This is my issue right now with not recieving a proper treatment.

[MaryF Administrator]

I think it is really sad that so many of us have to fight so hard to get anywhere near normal care. My daughter only 14, had a nasty migraine every day for two years, followed by up to 12 strange turns a day. Now finally she has been assessed and has SLE Lupus and probably Hughes, just like me. I have had to fight so very hard. My son had a diagnosis of possible migraine, one so severe it caused blackouts, and dead legs... he appears ok now. However the right kindly voice, wrote about our family history and advised baby aspirin for my daughter. She also has plaquenil now and is being monitored by a very kind paediatrician who is fast skilling up on Hughes and also by St Thomas. I know how very serious this disease.. AND it felt even worse to me not have some serious help and the correct medication. I know we can't take our eye of her or me or my son... however it feels a little less serious than when we had no help or medication, if that makes sense.

I have had at times the most rude and aggressive care, dismissing my seronegative hughes, despite the multiple clots I had. For my own benefit I started on aspirin years back.... and now at the grand old age of nearly 47 have passed an SLE Lupus test, plus show a speckled ANA disease profile, which fits with my other three things.

Serious it all is... and lack of care or diagnosis or help for the rest of your life within adequately trained staff makes our situations more serious, and critical events more likely.

I hope the current drive to change this situation can help this!

Mary F

[Hidden]

I would say its a 10 easily!! It has killed so many people I have met in person and online in the last four years. Its a force not to be reckoned with or not taken seriously.

I have been very guilty of thinking that maybe it "wasn't so bad" for me and that I was "fine" without proper anticoagulation. Luckily a fairly minor PE (as far as PEs go anyhow- all are serious) since I have been here in the UK has led to a wake up call and revelation for me to take this seriously. I know the docs I go to and the docs I know are very happy about that as I had been a very noncompliant patient.

Funny thing is- I am a nurse. I counsel patients in the ED (A&E) about not taking needed meds for Blood Pressure, diabetes, and the serious silent damage it causes that can make life worse in later years and even lead to death... Yet here I was doing the same thing with APS by being in a good bit of denial about what it could do to me. Yes, folks.. my Hello Kitty knickers are not going to protect me from it!!

So a 10 for sure. Knowledge is power, educating others about and advocacy is power squared. Let's keep up this fight!!

[jean48 in reply to Hidden]

Yes - I feel the same way. I've been strolling along convincing myself that this is nothing. And then all of a sudden my family doctor says that my other physical problem is nothing compared to APL.

[Hidden in reply to jean48]

I have been both foolish and lucky at the same time. I really understand the scope of it now and am working hard to get my weight down a bit lower (I am FINALLY in "normal" BMI) and as healthy as I can, as well as eating healthy, working out regularly, everything to increase my overall health and decrease my chances of an adverse event or flare and also help my body recover faster if I do have another. This last one is still being a bugger!

[MaryF Administrator in reply to Hidden]

good on you, I also try really hard with the diet and exercise... and have been very very worried about my children, and rightly so.. my 14 year old only just out of hospital! Still two funny turns a day, better than 14, but early days on plaquenil... she is due to be reassessed again at St Thomas; I always take my medication and take stock of what is going on... however where I live it has been truly appalling, I have had to fight hard! Mary F x

[Hidden in reply to MaryF]

Seems to be like that everwhere with prope medical care. I am lucky enough to be in the medical profession so I teach the docs and sometimes they listen as they know me professionally so that helps.

I understand the concern over the kids- my oldest had a baby 6 mos ago and I was sooo scared through her entire pregnancy- the OB had never heard of it and wouldn't test her despite some symptoms she has had in the past- random seizures, both her and identical twin sister have really bad migraines, etc... Neither have been tested so I worry, worry, worry.

[tim47]

I don't think it is a constant. It can be fatal so must be treated as having the potential for 10 but day to day the usual problems are 5 or more. The trouble is being prepared to deal with a quick dive up to 9 when things happen. I've been lucky and survived some really dodgy times , particularly since when it first manifested in the 70s.

[Hidden in reply to tim47]

Very good summation. Always be prepared for the worst but live as good as you can....

[paddyandlin]

Hi Jean welcome to the group.

I would say it is a 10 if you take everything into consideration, my first stroke was when i was 16 that was what caused me to be a wheelchair user, I really do belivee it depends on how much damage, how you recover, how you mental coability is and the support you have and how they cope and then how the medical profession take it.

Which for most people the last two are hard as you have to fight to prove the issue and also keep yourself sane so my vote is 10 beacuse its not just the risk of it killing you and yes you can be medicated but its the long term after effects are the things that can be more dangerous rather than the clot it self.

There are a number of people that have pulled through and become fantastic ambassadors after a life or death situation but if you are on your own and go through this some times i have met people who ask why did i bother and i get them to come here or tell them of mine an d the others on here and they are not alone.

sorry i think sometimes we stay on the medical and sometimes do not always consider the damage after diagnosis or incident.

Paddy

[jean48 in reply to paddyandlin]

YEAH I probably don't have the support I need dealing with this disease. That's most likely because the son that surrived the APS has some disabilities. His needs of course are always on the top of our list. I've been increaseingly feeling I have Attention Deficient issues. Thanks for sharing your story.

[paddyandlin]

Jean,

But you are not on your own now you have us and being a carer for someone can sometimes get you in a rut and you do put there needs before your self and do not worry with my memeory issues my wife thinks i have OCD some times i do the same job 5 times lol

we always here to help

Paddy

[jean48 in reply to paddyandlin]

Thanks so much for your words. It made me feel much better. I wish my husband wasn't so worried about me. Oh I'm an OCD person myself. My antidepressant helps with that.

[daisy11]

Without the knowledge from this website, I would be totally lost as prior to this did not really understand APS despite having it for about 20 plus years, where I actually did not suffer a great lot, but over the last couple of years and especially with having warfarin, it has come to fruition. Sadly my Mother passed away due to her lack of understanding from Warfarin, through this it has made me stronger and want to know more. I tend not to be fobbed off anylonger. My daughter suffers from it and so I want to be knowledgeable about it. I do not want to frighten my daughter but if only I had known about the dizziness, etc at first.

[SueLovett]

I think it is 9/10 Firstly 9 because I feel ill every single day and despite being on Clexane my Consultant has said I am still getting TIA's each of which causes damage.

I have white matter damage and nerve damage to the brain. I find it hard to cross the road on my own because I can never be sure if I am seeing things as they are.

I could go on but I won't.

10 because we found out after my mother died she had 'Autoimmune disease,

Vasculitis, Connective Tissue Disorder and her lungs had become like Tissue Paper!

All this after her death. Her GP kept saying she had 'A Bit Of A Tired Heart' and put her diuretics. I wanted to Sue him but my dad was too upset at the time.

I am now absolutely certain she suffered from Hughes Syndrome. She had regular episodes of DVT in her leg, Raynaud's, and many other symptoms coinciding with Hughes.

My Consultant is also certain she had the disease. He also thinks I have had it since I was a teenager I am now 56 (what an admission on line!) and was only diagnosed 3 years ago. He also tells me that if it had been diagnosed earlier I would in all likeliness have been treated correctly and suffered less symptoms and damage to the brain.

I hate what has happened to me and all of us who have been ingnored and misdiagnosed for years.

So 10x10x10x10 etc for me.

Apologies for rant

x to all Sue

[jean48 in reply to SueLovett]

Talk all you want. So sorry about your mom at late diagnosis. I had my son, Spencer in 1996 and they new nothing about APS. My Rheumy had to do research. I tend to blame myself for Spencer's disabilities even though it's not my fault. I'm turning 50 in November any tips on how I can ease into a new path?

[Lori-Bowers]

I feel this disease is very serious. I myself feel it is a 9, especially with the events I have experienced. I am always so happy to hear that some people are having an easy go of thngs, the longer the better. Sadly in my case and others such horrible damage was done in the beginning due to inadequate care that sickness is a constant. I find it a miracle that many of us are still here, so glad we all are still talking to this day!! Gives hope doesn't it?

[Hidden]

Depends on what other debilitating diseases you would rather have. I suspect that for the vast majority of Hughes syndrome sufferers, it does not compare to someone with ALS or MS or a wheelchair bound amputee and other far more serious ailment.

After 3 debilitating stroke causes my APS. Would have to rate the seriousness a 4 or less. But in reading this message board, I get the feeling that the treatment we get in the States is far more flexible that the in the UK.

This is not to say that you should take the disease lightly, but it is what it is and you will suffer more if you do not have a positive outlook everyday.

[jean48 in reply to Hidden]

Agree!!!!!!!!!!!!!!

[GinaD]

I'd rate the disease as a 10, because that first diagnosable symptom can be your only and last diagnosable symptom.

But after that? When you're diagnosed and decoagulated? What then? Does it remain at a 10? Do you live happily ever after? Sometimes yes . . .sometimes no.

And (forgive me -- metaphor ahead!)

Is sky diving dangerous? If you are trained, have all your gear in order, keep an eye on the weather and choose a landing site with no last-minute surprises -- then, no sky diving is not that dangerous. But if you are not careful and educated, then a small mistake can be fatal. Or an unforseeable change in the weather or ground conditions occurs then again, that next jump can be fatal.

How do you rate sky diving then? A 1 with a potential to turn into a 10? Its like driving down the highway. If your car has fuel, has passed inspection with safe tires and all, then the drive is perfectly safe. Until its not. Then it can be fatal.

So, extrapolating from my metaphor, I think that population studies and statistics is the only way to rate the "danger" from this disease.

[jean48 in reply to GinaD]

Love the metaphors!

[Mew808]

Its funny I ask people to rate things all the time. Ie pain fatigue, but when I need to rate I find it difficult. I guess it's 7-10. My APS has caused mini strokes which I recovered well from, MI in which cardiac stents worked, and pul hypertension which is now effecting me. I always was more scared of the lupus which seems to trigger everything. If I can get my lupus in remission I'm not as bother by APS (Hughes Syndrome ) as much

[jean48]

I have always dreaded being diagnosed with lupus. As of now I don't have the diagnosis of Lupus. But now I'm thinking APS may be the worse diagnosis. I always told myself that I just have primary APS no big deal. Now I belive APS by itself is a big deal.

Jean

[WayneL]

Hi,

My daughter tends to keep her symptoms to herself and is worryingly blase about it, given that she has had TIA's, PE's and DVTs all in the space of about 4 yrs.

It causes me to wonder if I'm overlooking stuff I should be aware of .

In her situation, I rate it for her as at least 9.

I worry that if something does go wrong, and she's not cognative enough to be able to communicate adequately (as she is prone to do these days) I may not pick it up quick enough to prevent a possibly fatal disaster.

I guess that we all live with this every day of our lives, and am so thankful for the time we spend together.

We have been truly blessed and I am glad to be able to take care of such a wonderful and loving heart as hers surely is.

Knowing what something is gives us power to deal with it.

The problem we most face is that the carer's (medical and other) knowledge is not being kept up to where it needs to be for the best results.

I feel, at least in some part, that we here are doing our best to fix this,wherever we are in the world.

And finally, I agree 100 % with the views of the above members.

Thank you all for being here.

Wayne l

[jean48 in reply to WayneL]

What a good daddy you are! My compliments to you.

Jean

[nyctapdancer]

It's a 10. it'll kill me someday I suppose.

But in the meantime, I'm 16 years into it and doing great. Having it put a lot of things in perspective and made me appreciate how fortunate I am in so many ways.

Thanks GinaD for the metaphors. I agree completely.