Hughes Syndrome/APS an Autoimmune Condition

[MaryF]

Hughes Syndrome/APS otherwise known as Sticky Blood or Antiphospholipid Syndrome, is something frequently missed by the medical profession, with unfortunate and serious consequences.

If you have a family history of autoimmune disease including Thyroid disorders, or relatives past and present with pregnancy loss, heart attacks, DVT's or strokes at an early age, and you yourself or close relatives suffer from stubborn migraines, which do not respond to standard medication, it is worth getting tested.

My whole family has this, our new charity aims to educate the public and the medical profession, we carry a list of doctors who full understand the condition. We have an event coming up in London if of interest. The website below is a good read, from the symptoms, to the treatment and also associated disorders. Some people even get wrongly diagnosed with MS as the features are so similar.

Basically if you have sludgy blood it will affect your brain and give you migraines among other symptoms. It is not unusual to have a Thyroid problem alongside this plus sometimes Sjogrens Disease, many are told they have 'Fibro'. My migraines did not go away until I had Aspirin and at times anticoagulation. Some woman unfortunately have multiple miscarriages and stillbirths and take years to get tested, the tests are cheap for any GP or consultant to order.

eventbrite.com/e/book-launc...

Hughes Syndrome/APS is a sort of cousin of Lupus!

ghic.world/

our next event: eventbrite.com/e/book-launc...

MaryF

[PattiJay]

Thank you MaryF! I have Sjogren's, Fibro, Lupus, as well as Migraine Disorder...and have had a PE 5 yrs ago and since I have HF too I've been put on Xarelto after Coumadin failed to keep my INR stable. Would it be reasonable for me to ask for a Hughes Syndrome test? Do you know what test they run? This is the first I've heard of it. Is it enough that I'm on Xarelto, or is it good to know if I do have this? I did have 5 miscarriages in my younger days. I appreciate hearing about this; it's very interesting! Meantime I wish you and your family all the very best in controlling this disease, and pray that something keeps your migraines at bay! I know how hit or miss that can be! Best regards!

~Pat

[MaryF in reply to PattiJay]

The Fibro often turns out to be Hashimotos or underactive thyroid. You should definitely be tested, here are the tests: ghic.world/hughes-syndrome/...

On the front of the website is a list of specialists, if you are not in the UK ghic.world/

On our attached forum on here, we have a list of UK specialists.

MaryF

[PattiJay in reply to MaryF]

Thank you so much for the quick reply! I'll ask my rheumatologist right away! This is such an interesting new medical condition that I am now aware of because of you! Again, thank you and I will pray for you that something helps your migraines. I'm on Topamax and Botox and yes...it's really hit or miss. Plus I take Cymbalta and Beta Blockers and meds for the Sjogren's and blood pressure and so on! It's never ending so who knows! I will let u know if I hear anything! Have a blessed week!

[MaryF in reply to PattiJay]

Most with Hughes Syndrome/APS feel better on Aspirin and or anticoagulants, they lose their migraines. MaryF