• Loretta MacInnes

Fabry Specialist Nurse Update

As per my last post, I was due an appointment with a Specialist Nurse from the Salford Royal Metabolic Team. This took place over the telephone at the end of last week.


The main thrust was to check on how I was doing on my treatment holiday.


I posed the questions for the nurse, as per my previous post, which were about how the treatment holiday could affect my Fabry and how the treatment will be resumed.


So the responses to the questions were very helpful:

There is research showing that a short treatment holiday should not be detrimental to a patient with Fabry, as long as they don’t begin to exhibit symptoms during this pause. This research is apparently based on the findings from when there was a shortage of one of the ERT drugs, and patients were without treatment for a short while.


How treatment will be introduced once the treatment holiday is over is currently being discussed by the specialist teams. It may be that if a patient has had a reaction in the past then they may have to resume treatment initially in hospital or with a Homecare Nurse staying with them for the full infusion.


The main message I was asked to give you all is that the Specialist Centres are there for you during this Covid-19 lockdown. If you have any concerns at all about your condition, symptoms or treatment then please call your specialist team. If you don't have your teams contact details then it may be helpful to check my Specialist Centres page.

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