In this piece we interview Dr Sundus Alusi who is developing a service for people with, or concerned about, FXTAS, as part of her movement disorder work at the Walton Centre in Liverpool.
Tell us a bit about your professional background
I am a consultant neurologist with a special interest in movement disorders at the Walton Centre Foundation Trust, Liverpool, appointed in 2004.
I graduated from Leicester University Medical School (MBChB) in 1992, and after training in medical specialities, obtained my MRCP, qualification, London, in 1995 and subsequently FRCP. My MD thesis was dedicated to the study of Tremor in Multiple Sclerosis and ended in a MD degree at Imperial College, London in 2001. I obtained the certificate of specialist training (CCST) in neurology in 2004.
As a consultant, my work involves the diagnosis and management of patients with various neurological conditions and in particular movement disorders. This includes Parkinson’s disease and related disorders, such as tremor, dystonia and ataxia.
Could you give us an overview of the Walton Centre?
The Trust, originally formed in 1992, attained Foundation Trust status in 2009 and is unique in being the only specialist NHS neurosciences trust in the UK.
Based in Liverpool, our catchment population is about 3.5 million and is drawn from Merseyside, Cheshire, Lancashire, Greater Manchester, the Isle of Man and North Wales.
In addition, due to an international reputation in some areas of expertise, referrals are received from other geographical areas of the UK. Service delivery is achieved via a ‘hub and spoke’ system and we have partnerships with 13 NHS trusts across the area we serve.
Why did you become interested in FXTAS?
Because of my specialist interest in tremor and hereditary movement disorders, I was approached by my predecessor Dr Trender-Gerhardt (Manchester) to take on the role of neurology advisor to Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS) patients. I was particularly delighted to get this invitation because of a personal link, having a relative diagnosed with Fragile X syndrome. I have been liaising with the Fragile X Society since then in setting up a service for FXTAS.
Who is the clinic aimed at?
In my movement disorder clinic at the Walton Centre, I see people diagnosed with/affected by FXTAS or people who are concerned about having symptoms of the syndrome. Referrals from all over the UK are welcome.
What does a visit to the clinic typically entail and what are the benefits?
At the first visit, I make an assessment which would entail taking a full history and examination and arranging investigations (which may take place in separate appointments) , if necessary, such as an MRI head scan or Nerve conduction studies. Explanations are provided regarding the syndrome, its symptoms and available services. Symptoms such as tremor and slowness of movements can respond to certain medications. Recommendation for treatment of other symptoms such as loss of balance, cognitive issues or anxiety can also be given as part of a patient-centred, holistic approach (these recommendations are then considered and implemented by your local physician). An important part of the assessment is identifying symptoms that may not be related to FXTAS and may need looking into by local clinicians. Some people require this assessment to be reassured that they do not have features of FXTAS.
How can people request a referral to the clinic?
People from all over the UK who think they could benefit from our clinic can request a referral (GPs can do this electronically) from their general practitioners to the Walton Centre. Alternatively, if they have already seen a neurologist locally, they may be able to request a referral directly from them to our clinic.
Do you have any long term goals for your FXTAS work?
We have set out to establish a high quality advisory service for the benefit of people who are affected by FXTAS in the UK. I am also hoping to set up a UK based registry for FXTAS which will form a platform for future research into therapies for FXTAS. By liaising with other international centres, we can ensure that our work is in line with current advances in the field. Furthermore, via the Fragile X Society, we have recently stared communication with the International FXTAS Consortium to collaborate in this area.
Correspondence/referrals can be sent to me directly:
Dr Sundus Alusi
Consultant Neurologist and movement disorders specialist
The Walton Centre Foundation Trust
Fazakerley
Liverpool L9 7LJ
Thank you Dr Alusi for all your work for our Fragile X community!