Spontaneous coranry artery dissection (SCAD)

[Anna3800]

I was recently diagnosed with SCAD and unfortunately their is limited research on this, I also can't find any information on the BHF, Lancaster hospital appear to be the leader for resurch but again very limited is their any one out their with information or with this condition on my future.

[skid112 Heart Star]

Hi Anna,

A quick Google search google.es/search?q=spontane..., shows a number of sites, mainly in the US.

The BHF have an information sheet here, bhf.org.uk/publications/hea...

Details of research funded by the BHF, here bhf.org.uk/research-project...

a charity group into SCAD here beatscad.org.uk.

Hope that helps

Mark

[Anna3800 in reply to skid112]

Thank you for your kind research, much appreciated

Anna

[Milkfairy Heart Star]

Hi Anna there is a support group based in Leicester where they keep a registry of patients along with researching into the condition.

scad.lcbru.le.ac.uk/

nihr.ac.uk/news-and-events/...

[JoanyB]

Hello Anna. As you have probably found out, SCAD is an uncommon (used to be called rare) condition, and can also be mis-diagnosed or under-diagnosed. The latter two happened to me. Two years ago I was diagnosed with Takotsubo Cardiomyopathy (Broken Heart Syndrome) as the angiogram showed my arteries were clear, and it was 6 weeks later after an MRI scan that a tear in a coronary artery was diagnosed. No mention of SCAD and I was told it was a 'blip' and shouldn't happen again. I did cardio rehab and was doing fine until it did happen again last September and I was given the correct name of SCAD. This time the angiogram showed that the previous tear had healed. (Don't worry about recurrence as this only happens to a relatively small percentage - I was unlucky although it did lead me to a full diagnosis). There are only two SCAD specialists in England - Dr Adlam who is carrying out the research at Glenfield Hospital, Leicester, and the previous Research Fellow who now works in London. Many cardiologists know very little, if anything, about SCAD as I found out!

Sorry I seem to have rambled on a bit there! 'Milkfairy' has already given you the link to Leicester, and you will find a link to the Facebook support group under 'Patients & Family' if you feel that would be helpful.

Unfortunately the BHF only gave a grant for a specific time and Beat SCAD were recently unsuccessful in getting a further grant. The research is now mainly funded by the NIHR and donations.

Good luck for the future. It is a difficult diagnosis to get your head around as it happens to those who are otherwise perfectly fit with no cardiac risks at all! I think you will find the Facebook Group useful, but if you don't want to do that then you can ask to be put in touch with other 'Scadsters' (!) by email if you feel it would help.

[Anna3800 in reply to JoanyB]

Thank you so much for your reply it has been very informative

Anna

[Milkfairy Heart Star]

Hi Joany B

There is a common theme to these supposedly rare unrecognised conditions. They are more common in women

blog.bhf.org.uk/not-my-prob...

It would be great if the Cardiology world were also more aware of these conditions too!

Women have a poorer outcome than men after a heart attack especially those under 50 years of age.

Dr Adlam's Research Fellow I believe is now based at Charing Cross Hospital in London.

[Cocolelaissey]

Hi ,I have just found out that a heart attack 18 months ago was a scad ,I have found limited info but I have been told that the daily chest and jaw pain is something I will have to live with ,do you have pain or other symptoms as it can be very concerning ,I have also found a UK scad group in Facebook and I have requested to join