10 things to know about SCAD
When you are first diagnosed with SCAD there is lots of information to absorb, so here is our ‘top 10’ of things we think you will find helpful.
1. How can I find information about SCAD?
Knowledge = Power, so we always recommend that you get well informed (see links below) and go into appointments armed with a list of questions and outcomes that you would like.
Here is a summary of the key information Beat SCAD recommends that SCAD survivors have at their finger-tips.
Firstly, look around our website. Newly diagnosed SCAD patients often feel like their heads are spinning! There is so much information to take on board… But help is at hand with our leaflets and other documents.
We also have lots of videos of talks given by UK SCAD experts on our Youtube channel.
The first video we advise you to watch is by Dr David Adlam (lead UK SCAD researcher) called ‘Redefining SCAD’. He gave this talk at the Beat SCAD conference in June 2018. He talks about what SCAD is (and is not), how it should be treated and managed longer term. He talks about the medicines we get put on and when they are needed, latest research ideas and more.
2. I’m having ongoing symptoms, what can I do?
Ongoing chest pain is common among SCAD patients during the first year or so. See our SCAD management section for more information.
It’s a good idea to keep a journal. Jotting down symptoms (physical and mental) and feelings may help us to spot triggers for chest pain after SCAD. Common triggers are things like dehydration, tiredness, doing too much too soon, doing some new form of physical work for the first time after our SCAD – eg vacuuming, hanging out washing, carrying heavy shopping etc. A journal is helpful for medical appointments recapping key events and dates etc. Also for illustrating that eventually the bumps in the road get smaller and spaced further apart…
You also might want to consider buying medical ID jewellery to wear for peace of mind.
Some SCAD survivors make their own SCAD information pack. It could include items such as:
- your hospital discharge letter
- copies of any ECGs
- Beat SCAD literature
- Beat SCAD’s ICE (In Case of Emergency) card
- any recent blood test results
- any recent blood pressure print outs
Keep your pack in a clearly labelled zip up container – a clear plastic pencil case works well. Tell your loved ones where they will find it, perhaps in your bag or somewhere safe in your home. That way everyone knows where to find important information relating to your SCAD if it is ever needed.
3. Mental wellbeing
SCAD affects us all mentally as well as physically, some more than others. Sorting out our heads after SCAD is key to physical recovery. It is hard to do one without the other! Many suffer with anxiety and panic for the first time in their life. Rest, loving support, healing and counselling can all help.
This video by Dr Abi Al-Hussaini, SCAD expert at the Chelsea & Westminster hospital, explains the mental well-being side of getting over a SCAD.
4. Who can I talk to about my experiences and feelings?
Stay hopeful – you are not alone! Unlike the SCAD survivor pioneers from 5+ years ago, we now have Beat SCAD and various Facebook support groups to hold us up, listen to us when we are frightened, or angry, or sad – and to cheer with us when we have things to celebrate.
It’s unlikely that any SCAD patient will be glad that they had a SCAD, but most long-term SCAD patients will tell you about something positive that has come out of their diagnosis. Many re-evaluate their life – work and relationships – and, with time and healing, come to know what really matters to them so that they can try to put most of their energy and focus into those things.
You can also meet other SCAD patients in person – there are often local get-togethers and Beat SCAD organises walks and conferences, so keep an eye on our website, social media pages and newsletters.
If you want to talk to a Beat SCAD trustee, click here to email us. We will respond as soon as we can but if you don’t see a response in your Inbox within 5 working days, please check your Junk or Spam folders.
5. There is hope
Please have great hope – so much has changed for the better in the past 5 years. Many more doctors know about SCAD these days than before, there is so much support for SCAD survivors, and we know of people in their 50s/60s/70s living healthy, happy lives up to 20 years or more (which is as far as our community membership goes back) after their SCADs.
The SCAD UK & Ireland Survivors Facebook group was started in 2015 and there are now more than 800 members. There are over 4,000 members of an international SCAD community on Facebook (Sept 2020). Not bad considering many of us were told we would never meet another person like us!
6. SCAD also affects our loved ones
Our family and friends can be affected by our SCADs, and there is support for them too. The SCAD Friends and Family Support group on Facebook is a helpful way for them to discuss their questions and concerns.
7. SCAD affects your children
For those who have children, whether or not they witnessed your SCAD, this leaflet may help you discuss it with them. And this video explains how to talk to children and help them come to terms with what has happened to you.
8. How can I educate my doctors about SCAD?
Be ready to teach and self-advocate… Ask any medical professional you interact with if they have heard of SCAD. Give them our leaflets.
When you meet your GP take a copy of our Aftercare for SCAD patients leaflet. Most GPs will not have met a SCAD Survivor, so this leaflet explains what support you may need.
When you meet your cardiologist, print out and take a copy of the Beat SCAD summary of the European Position Paper on SCAD which was published in 2018.
The position paper is in the European Heart Journal.
There is also a summary in Open Heart journal.
In September 2020 The European Society of Cardiologists revised their guidelines for the treatment of Acute Coronary Syndromes. This is the first time that they have included information about SCAD.
The guidelines explain that “SCAD accounts for up to 4% of all ACS, but the incidence is reported to be much higher (22–35% of ACS) <60 years of age, in pregnancy-related MI, and in patients with a history of fibromuscular dysplasia, anxiety, depression, or previous neuropsychiatric disorders.”
You may find you are pushing on an open door, but many of you will have to be your own advocate and ask for what you need and want.
9. How can I raise awareness of SCAD?
As with any uncommon condition, we can all help raise awareness of SCAD. So, please print out and carry with you these leaflets about SCAD:
- What is SCAD?
- SCAD for Healthcare Professionals
- Aftercare for SCAD patients – aimed at GPs and other medical professionals
Share them with your friends and family members too, so that they are aware that fit/healthy men and women can have heart attacks too. Tell them not to ignore cardiac symptoms but to get checked out.
10. How can I get news from Beat SCAD?
To keep in touch with Beat SCAD and make sure you’re on the mailing list for news about research, fundraising, events and more and to tell us about your SCAD, please click here to complete our form.
And to receive Beat SCAD newsletters, click here to keep up to date with all that is happening at the charity and in the world of SCAD research.
If you find any additional useful resources please email us so that we can review them. Please also let us know if you discover any broken web links.