Is there a link between SCAD and Hugh... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Is there a link between SCAD and Hughes Syndrome?

MariaBanelli
MariaBanelli

I'm not new here but its a place I've horribly neglected... sorry.

My sister was recently diagnosed with Fibromuscular Dysplasia (FMD) which is known to run mainly in the female line of families. She has Spontaneous Coronary Artery Dissection (SCAD) which is often related to FMD and was only diagnosed with SCAD after a full cardiac arrest (fortunately she was in casualty at the time). SCAD is, at least in some ways, similar to Hughes Syndrome and so my question is, has there ever been any link found between SCAD, FMD and Hughes Syndrome?

The reason I ask is, both my sister and myself have always had that mottled bingo rash on our legs, wrists and chest. Both of us have had problems keeping pregnancies going. She has miscarried 4 times, me 6 times. Both of us have suffered Phlebitis. My late maternal grandmother also had the same mottled skin we have and she eventually managed to have one child after many miscarriages. She succumbed to a DVT whilst still quite young but she was never diagnosed with anything. She was always told that her mottled rash was a sign of good circulation!

Neither FMD or SCAD are connected to this odd mottled rash or miscarriage.

Up until recently SCAD was thought to be very rare, but more recently a large number of postmortems have shown SCAD to be the cause. There is still only one specialist for the whole of Britain and there is an awful lot they still don't understand about this illness.

I have never been tested for Hughes and neither has my sister.

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MaryF
MaryFAdministrator

Hi, welcome back, I think it is best if I put some papers here for your to read re FMD, so you can see the connection, which has been written about:

ncbi.nlm.nih.gov/pubmed/879...

ncbi.nlm.nih.gov/pubmed/203...

wikigenes.org/e/mesh/e/8516...

Also re SCAD: ncbi.nlm.nih.gov/pubmed/217...

heartviews.org/article.asp?...

MaryF

MariaBanelli
MariaBanelli in reply to MaryF

MaryF, I can't thank you enough for all this information. I'm going to sit and read through it tonight.

MaryF
MaryFAdministrator in reply to MariaBanelli

I hope it does not send you to sleep! MaryF

MaryF
MaryFAdministrator in reply to MariaBanelli

and your various doctors may be interested in our charity website: ghic.world/ MaryF

Thanks APsnotFab,

We, that's my husband and me, lived in France. Since being back in the UK I have mentioned this to my doctor but my doctor just says its highly unlikely.

I'm going to take your advice and have the test done privately. Thank you for the recommendations.

The SCAD specialist my sister is under is hugely interested in her illness. She's the first person he's met who has SCAD and survived complete heart failure. I'm sure he will be more than happy to test her for APS.

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