Scones for SCAD 2018 launches

Scones for SCAD 2018 launches

Beat SCAD is pleased to announce the launch of this year’s Scones for SCAD events.

To celebrate Heart Month and Rare Disease Day on 28 February, we are asking supporters to host a tea party or other event during February where the central theme is scones – but feel free to bake anything you like! We’ve suggested some ideas in our fundraising pack (see below for details of how to download the pack). Click here to find out more about Scones for SCAD and get inspiration from previous years’ events.

The theme of this year’s Rare Disease Day is Research. SCAD patients know that research is vital if we are to get answers, treatments and improved diagnosis and care. Current research in the UK, USA, Canada and Australia, as well as the creation of a European Study Group in 2016, give us hope that we are getting closer to discovering what causes SCAD.

Rare Disease Day is also an opportunity to recognise the major role patients play in research. The UK SCAD research was initiated by patients and the researchers continue to welcome our input. The programme was initially funded by the British Heart Foundation and National Institute for Health Research, however the BHF funding ended in 2017, so we rely on our supporters to fundraise to keep the research project going.

Please click on this link to register your interest and download an event pack giving more details.

If you have any questions, email us at contactus@beatscad.org.uk.

And don’t forget to sign up for our newsletters to keep up to date with our activities.

UK SCAD patients participate in Italian research

UK SCAD patients participate in Italian research

Research into SCAD is of paramount importance to everybody affected by SCAD – and is a key component of the Beat SCAD mission: Awareness | Support | Research

Patients, partners and family members alike desperately want to understand why SCAD happens and find ways to predict and prevent SCAD from occurring. Thankfully, more and more research is taking place around the world with many doctors collaborating to bring their ideas and findings together in this quest for answers – all of which brings much hope to the SCAD community.

Dr David Adlam, the lead SCAD researcher at the University of Leicester in the UK and Chair of the European Society of Cardiology – Acute Cardiovascular Care Association (ESC-ACCA) SCAD Study Group, has teamed up with Professor Rosa Maria Bruno, cardiovascular researcher and assistant professor at the Department of Clinical and Experimental Medicine, University of Pisa, to support her study titled FUCHSIA (Very high-Frequency Ultrasonography for arterial phenotyping in patients with Cervico-Cerebral Artery Dissection (CCeAD), Hypertension, Spontaneous Coronary Artery Dissection (SCAD) and FibroMuscular DysplasIA (FMD)). Dr Adlam’s role is to confirm the SCAD diagnosis of each participant.

Professor Bruno’s main field of research is non-invasive evaluation of functional and structural vascular alterations in individuals with traditional and emerging cardiovascular risk factors. The FUCHSIA study aims to recruit 30 SCAD patients, in addition to 30 patients with renal FMD and hypertension, 30 first-degree relatives (FMD-fam group), 30 patients with CCeAD, plus age and gender matched volunteers as control groups for comparison.

Professor Bruno said: “We would like to investigate if we can identify alterations in small arteries which may predispose to SCAD and to other female-specific rare vascular diseases.”

Dr Adlam said: “What they have in Pisa is a very high-frequency ultrasound which means they can get amazing quality pictures of the blood vessels.”

An invitation to participate was extended to the UK SCAD community and so far two groups have travelled to Pisa to undergo assessments by Professor Bruno and her research team.

Beat SCAD Chair Rebecca Breslin participated in December and said: “This was an amazing opportunity to contribute to the ongoing research. Professor Bruno and her team are fantastic and took great care of us. The FUCHSIA study is really interesting, I can’t wait to hear about the findings.”

Rebecca (pictured right below) shared her experience with fellow SCAD survivors (l to r) Jacqui, Frances and Lucie.SCAD patients in Pisa Dec 17

The first group (pictured below) visited in November – Sarah, Andrea (l to r standing), Sam and Liz (l to r sitting).

Andrea provided a summary of her study day: “We arrived at the hospital all together at 9am and met the lovely Professor Bruno who explained everything that was going to happen. Then we all got separated and started doing the various tests with her colleagues: blood pressure measurements in each arm, three times; ultrasound of the neck and groin on both sides and arteries of each arm; a blood pressure cuff was inflated for about five minutes before being deflated to assess blood flow; and then the high-frequency ultrasound where the technician took images of the arteries of my middle finger, arm and neck – everything on left and right. We were finished just before 1pm then ate lunch with Prof Bruno and her team. They are genuinely great people. This was my best hospital trip ever!”

Professor Bruno (fourth from right, front) and her research team with the SCAD patients who went to Pisa in November 2017

Professor Bruno (fourth from right, front) and her research team with the SCAD patients who went to Pisa in November 2017

Both groups made the most of their self-funded road trip to Italy, as you can see from the wonderful picture gallery.

 

 

Andrea continued: “The highlight for me was to spend some time with Sam, Sarah, Liz and their hubbies. Pisa is amazingly beautiful, everything is within walking distance of what we wanted to do.”

Lucie said: “I could sum up our trip to Pisa in a few words… a worthwhile adventure! We travelled in pairs… It was very reassuring to travel together and a great opportunity to get to know each other. We spent the first afternoon exploring and then had a delicious Italian meal in the evening. We swapped SCAD experiences and shared our stories and soon it felt as if we had known each other for years!”

Frances said: “I jumped at the chance to help with this research project… The day consisted of a rotation of different ultrasound scans, a blood test and a health questionnaire session with Dr Bruno – nothing too onerous but it seemed to take a long time. We then had a lovely lunch and cakes with the team before we said our goodbyes. I would recommend the trip to anyone who gets the chance to go, not least for spending time with fellow SCADsters and sharing experiences.”

Lucie concluded: “It was a wonderful few days, with wonderful new friends, and all for a good cause. I look forward with anticipation to the results of Professor Bruno’s team and I would recommend a trip to Pisa to anyone thinking of volunteering.”

Dr Adlam added: “Thanks to all the Beat SCAD patient volunteers who are helping with this key study. Rosa is generating some fantastic data.”

The FUCHSIA study is currently still recruiting SCAD patients. If you are interested in participating, please email Rebecca@beatscad.org.uk

 

 

 

 

 

SCAD and post-SCAD pregnancy clinics established in London

SCAD and post-SCAD pregnancy clinics established in London

Since moving from the Leicester research team to a Consultant’s post at the Chelsea and Westminster Hospital, Dr Abi Al-Hussaini has been busy spreading the word about SCAD.

She has set up a Friday afternoon clinic to see SCAD patients, with the aim of getting all required imaging, MRI and CT, done on the day of their appointment if needed.

Dr Abi (pictured above at the Beat SCAD conference 2016) said: “This is almost like a one-stop shop and I would see the patient after their test(s) and advise on future management. Referrals can come via GP, clinicians, consultants, rehab nurses etc.”

If patients consent to research, Dr Abi will send all the data and imaging she collects to the SCAD registry at Glenfield Hospital for research study.

Rebecca Breslin, Chair and co-founder of Beat SCAD, said: “Dr Abi’s SCAD Clinic in London is fantastic news for the SCAD community. Leicester, though central, can be difficult for some patients to get to, so a second location for seeking specialist consultation is a wonderful step forward in improving services for SCAD patients throughout the country. And the link back to Leicester for the research study is perfect.”

Pregnancy after SCAD

Dr Abi has also been working with the High-risk Pregnancy Clinic, which includes another cardiologist and obstetricians. They have some experience of SCAD and pregnancy post-SCAD and how to support and deliver babies.

They have agreed to set up the following:

  1. A pre-conception clinic (run by obstetrician consultant, Dr Roshni Patel and Dr Abi), where patients considering a future pregnancy can have their questions answered and get advice. The clinic can also advise on contraception and other issues related to SCAD.

“This service currently runs for other cardiac and obstetric issues and we would aim to have an additional clinic for SCAD,” said Dr Abi.

  1. A high-risk pregnancy clinic, including Dr Patel, Dr Abi, Prof Johnson and Lorna Swan. This will be mainly for women who are already pregnant and will need a plan of care to be drawn up for them.  There is the capacity to have a one-off referral, or plan to deliver the baby at Chelsea. There will be access to the specialist midwife who will closely liaise with relevant teams as needed.

Karen Rockell, Beat SCAD Secretary and Trustee, said: “We are working hard to educate maternity services about pregnancy-related SCAD to ensure symptoms are not dismissed and patients are diagnosed early. This initiative is a fantastic step forward that will raise awareness further and increase knowledge within the cardiac, midwifery and obstetrics specialities.”

Rebecca said: “I have seen numerous women in our patient group despair at being told by their doctor that pregnancy after SCAD is an absolute no-no… without true facts or statistics to back up such adamant advice. Some of the women already had one or more children but always planned more, whereas others were yet to begin their families and felt that SCAD had robbed them of the opportunity. However, some of those women and their partners bravely chose to stick to their plans and desire to pursue pregnancy and most have thankfully had no problems or recurrence. Plus they have now started to contribute to facts and statistics to help others.

“The pre-conception and high-risk pregnancy clinics established by Dr Abi will be an important resource for members of the SCAD community faced with the post-SCAD baby dilemma. Huge thanks to Dr Abi and her colleagues for putting this in place to meet the needs of many SCAD patients.”

SCAD patients attend presentation by FMD specialist

SCAD patients attend presentation by FMD specialist

SCAD and Fibromuscular dysplasia (FMD) patients attended a talk in November about FMD, given by Professor Alexandre Persu, European Fibromuscular Dysplasia Consortium Lead at the Université Catholique de Lourain, Belgium. The talk was hosted by the University of Leicester Cardiovascular Sciences Department.

SCAD patients may also be diagnosed with FMD, so it was a great opportunity for members of the SCAD community to learn about the condition from a renowned expert. Professor Persu observed that FMD overlaps with SCAD, CAD (Carotid Artery Dissection) and migraine. Interestingly, many SCAD patients have also reported having migraines. However, migraine is a common condition with an estimated 1 in 7 people suffering, according to The Migraine Trust.

Professor Persu said FMD is believed to be: idiopathic (ie a condition that arises spontaneously or for which the cause is unknown), segmental (can appear in different segments of the blood vessel), non-atheroschlerotic (not associated with traditional coronary artery disease) and a non-inflammatory condition.

Patients with FMD have abnormal cellular growth in the walls of their medium and large arteries, according to the Cleveland Clinic. This can cause arteries with the abnormal growth to look beaded. Professor Persu described two types of FMD: multifocal, displaying the ‘string of beads’ appearance, and unifocal, having distinct focal lesions or tubular narrowing.

FMD is a stable condition for the vast majority of patients he has seen. A very small number do progress quickly, though, and he said it is hard to identify which cases will do this.

Professor Persu is investigating both the systemic and genetic aspects of the disease. He believes that FMD is a systemic vascular disease, usually with multiple arterial beds affected.

He said:

  • Illiac FMD tends to be less symptomatic than renal or cervical FMD (in neck arteries).
  • Cervical FMD may be more common than renal artery FMD.
  • In the US FMD registry, multisite FMD is the norm. 35% have one or two sites of FMD, 20% have three or more sites.
  • FMD has also been linked to other kind of vascular abnormality and other systemic inflammatory conditions.
  • FMD might be a group of diseases.
  • SCAD may be linked to FMD in coronary arteries in some cases.

In terms of genetics, there are reports of some family members (siblings, twins) with FMD.

In addition, Prof Persu has seen examples of patients with dissections in 2 arterial beds but no signs of FMD or connective tissue disorders like Ehlers Danlos. As yet he does not know why these dissections occur.

The prevalence of FMD is unclear. At the moment FMD is observed in 0.02-0.08% of the population but in a study of healthy kidney donors, renal FMD was observed in 3-6% of donors. FMD is sometimes ‘silent’ – present but with no symptoms. Typically FMD is found in people aged 55-85 but it has been found to be the cause of stroke in infants and young children, although this is very rare.

Diagnosis of FMD

In the past, renal duplex scans were the standard diagnostic tool for FMD, but the current first choice screening tool is a Computed Tomography Angiography (CTA) or Magnetic Resonance Angiography (MRA) scan. But awareness needs to be improved in the radiology community to enable them to correctly interpret the images obtained. There is a big difference between ‘mild abnormalities observed’ and ‘FMD suspected’, he said.

The more tortuosity in arteries the more likely someone is to have FMD.

Professor Persu said best practice for diagnosing FMD is as follows:

  • Any hypertensive women under 50 years old should probably be screened for FMD.
  • If renal or carotid FMD is discovered other arterial beds should be checked too, including looking for aneurysms in the brain.
  • A ‘brain to hip’ scan to check for evidence of FMD is advisable.

In Belgium, he said, if a patient has severe renal or cervical FMD they are seen annually and have an annual renal duplex to monitor. Every 4-5 years they have a full MRA (more frequently if the patient has high blood pressure).

Renal FMD can be helped by renal angioplasty (using a balloon to open up the narrowed artery), stenting is not recommended. Surgery is sometimes considered when there is an aneurysm on the artery.

Anomalies in FMD diagnosis

In some studies (North America) 85% of SCAD survivors show ‘evidence’ of FMD, but the true prevalence is still to be established. Professor Persu believes that it may be being over-diagnosed and that if tests are done ‘blind’ the percentage decreases. Dr David Adlam, who is leading the UK SCAD research project, believes the incidence in the UK group to be much lower.

FMD research

As with SCAD, research into FMD is in its very early stages and, although a number of interesting leads are being followed up, there are no concrete findings to share – yet.

Professor Persu explained what his research priorities are:

  • Identify environmental/genetic factors involved.
  • Assess disease progression (rapid progression of FMD is extremely rare, most patients are very stable, FMD patients who smoke are more likely to have a progressing form of the disease, so all are advised to give up).
  • Establish a registry to collect cases for study.
  • Standardise clinical practice.
  • Establish a network of expert centres.
  • Support the European Society of Hypertension in their work.

The European Registry has 633 patients so far and Belgium has 166 patients in eight centres.

Dr Adlam is working with Professor Persu to try to establish a better understanding of any possible link between SCAD and FMD. They will be working together on consensus statements and position papers to share with the international medical community.

Patient support, as with SCAD, is important, and FMD-Be, a patient group, based in Belgium, is hosting a patient meeting in Brussels on 24 February 2018, where Professor Persu will be speaking.

Pictured are SCAD patients (l to r) Denise Wilson-Pink, Suzanne Smith, Sally Bee, an FMD patient, Martina Fletcher, Lisa Barton, Sarah Coombes and Jaqui Hughes.

With thanks to Sarah Coombes, who took notes at the presentation.