Patients from all over the UK travel to Salford Royal’s fibromuscular dysplasia clinic, the first of its kind in the country.
We don’t yet know the cause of fibromuscular dysplasia (FMD), an under-diagnosed and rare blood vessel condition that causes narrowing or enlargement of arteries. It can result in high blood pressure, strokes, heart attacks and kidney impairment in young – to- middle aged people.
And although the effects can be very serious, too many patients struggle to get a diagnosis and then find that care is fragmented.
It’s most frequently diagnosed in women and particularly affects those aged 30-50, although it can affect all ages, including children. Symptoms can include headache or migraine, neck pain, high blood pressure and pulsatile tinnitus (a whooshing sound).
Following the UK’s first patient day for FMD in 2019, Renal Consultant Dr Tina Chrysochou (pictured) and colleagues at Salford Royal, Dr Aparna Lukalapu, Dr Amit Herwadkar, Dr Ed Lake and Dr Aine de Bhailis, set up their multidisciplinary clinic, which brings together expertise in renal and neurological care, interventional radiology and neuroradiology. It accepts referrals from all over the UK and offers an individualised service to around 170 patients.
Alongside this, there’s a formal patient support group, FMD UK and Ireland (find it on Facebook and YouTube) to raise awareness and offer peer support. They will again be involved when the team hold another patient information day on 20 September, which will be accessible online. Registration is available via the FMD UK Facebook page.
Registry study
Both experts and patients agree that not enough is known about FMD and there’s a need for more research.
That’s led to the UK FMD study, the first registry -type study collecting demographic data for the UK. Salford Royal is the principal investigation site for this, with six other UK hospitals involved. Dr Chrysochou is also the Principal Investigator for the FMD specialist group in RaDaR, the national renal rare disease registry.
Dr Chrysochou explained: “the UK FMD study is the ‘UK branch’ of the well-established European and International FMD initiative (FEIRI) and will establish a comprehensive medical and imaging resource as well as opening up collaboration for international projects.
“Eventually we would like to see other centres developing multidisciplinary clinics like Salford’s and to raise knowledge and awareness among the medical community.
“Among the research questions we want to explore are whether FMD is hereditary and why it is more common in women. We want to identify specific risk factors associated with the onset and progression of FMD, such as exposure to smoking or hormonal agents such as oral contraceptive pills or HRT.
“In addition, we aim to identify the links between FMD and spontaneous cardiac aortic dissection (SCAD), an emergency condition that occurs when a tear forms in a wall of a heart artery.”
Northern Care Alliance’s charity NorthCare is supporting some of the research work thanks to fundraising by the staff of hydraulics firm Pirtek UK and Ireland.