Is APS a life threatening illness

[Rhian21]

please could the answer include real evidence ie leaflet number or web address, page number etc..thankyou

[paddyandlin]

Unfortunately it can be – often before the true diagnosis is fully established – one of the causes of sudden collapse is a lung clot (pulmonary embolism) or stroke. Once the diagnosis is made, adequate anticoagulation should protect against a recurrence. This came of the Hughes Foundation Site and if you need more information Kate at HSF can send more details hughes-syndrome.org/patient...

hope this helps

Paddy

[Rhian21 in reply to paddyandlin]

Thankyou Paddy !

[Hidden]

Yes, it can but there statistics are extremely difficult to find. I am currently working with both Patient UK and APS ACTION who are extrapolating data from seminal papers such as the BMJ. If you want to look for figures, I suggest you look at the Patient UK download pages - however, they are in the process of re-writing these and they will let me know when the revised version is available. This new, verified data, will be included in our new website. However, I although they discuss first events the morbidity rates of APS are not really mentioned.

I do remember a paper coming out a year or so ago about APS and morbidity, so your best best would be to search the scientific papers on Pub Med - here is one to start with: ncbi.nlm.nih.gov/pubmed?ter....

[Rhian21 in reply to Hidden]

Thank you Kate. I'm in an appeal situation with the DWP, when I first filled in their medical form they asked....(tick box) has a life threatening illness..I ticked yes as I believed it to be the case although nothing is ever quite that straight forward. I still feel that I ticked the box accurately..but would like evidence to take with me to a tribunal that backs up the claim. I think the wording on the Foundations web page will be enough for me to explain my reasoning and then I guess it will be up to decide whether they want to re-adjust the wording on their forms to be a little more specific..but thanks for your trouble

[MaryF Administrator]

Hi there, Yes to you and also to all the information offered above, Diagnosis is half the battle to make things safer. All the best to you. Mary F x

[WayneL]

Hi.

It might be worth contacting the American Society of Rheumatologist to see if they have any current data on morbidity rates that relate to Aps.

Hope this helps you in your fight.

[Rhian21 in reply to WayneL]

Thank you Wayne..will do asap

[jessielou]

Hi Rhian

Cannot add any further factual supporting evidence, mine is purely anecdotal, but when I arrived at A n E with suspected dvt, it had already moved to lungs forming large clots in lungs, pumped me full of steroids, clexane injections, nebuliser, painkillers, on oxygen etc.

My partner was told had we left it any longer I wouldn`t have survived. Oxygen levels were through the floor, blood pressure dropped to 80/35, I was very poorly.... I will add this was 3 to 4 years before diagnosis, and now am on life long warfarin etc.

Closest i`ve come to meeting the grim reaper, do not want to go their again!!!

Take care very gentle hugs love Sheena xxxx

[Rhian21 in reply to jessielou]

So brave of you to share that with us Sheena, thankyou ! I went through an emergency ectopic hemorage..so Im with you ! xx

[Herb]

The effects of a clot can be life threatening and APLS puts us at risk of clots. so I suppose you could say "it depends".

[Rhian21 in reply to Herb]

Thankyou !