• Loretta MacInnes

Reflections on the Lockdown to date.

It’s been an interesting few weeks in #lockdown. I had my shielding letter on the first day of issue and it came as no surprise. Twelve weeks seemed like a long time, but in reality I didn’t think it would make much difference to me as I don’t go out that much anyway.


However, being told you can’t go out somehow makes it harder doesn’t it?


The increasing death-toll is unbearable and my heart goes out to each and every family who has lost a loved one during this terrible crisis. It does make you question the actions taken by those in power and ask what more could have been done to reduce this number, and what should be done to make sure more people do not die unnecessarily.


I really can’t say how much I admire, and am grateful to, our #keyworkers. This includes our doctors, nurses, carers, shopkeepers, researchers, delivery drivers, pharmacists, postal workers, warehouse workers, waste management personnel, energy workers… they are not only dedicated, but incredibly brave. I can’t thank them enough for looking after those who are ill in hospital, caring for our care home residents and enabling the rest of us to safely isolate in our homes. I know that there are campaigns asking for these #keyworker heroes to be given medals, but I think a decent bonus and a pay-rise might better reflect their value to our society. After we return to some form of normality, I hope that those in power remember the workers that were actually vital to keep our society going and ensure that they are paid and rewarded accordingly.


The 10 Downing Street briefing has become the must-see broadcast, but it’s been an emotional rollercoaster watching it. Initially it seemed like the best plans to tackle the #coronavirus had been put in place, but now I think that much more #testing should have been done, with contacts traced and isolated. I know we can say that hindsight is a great thing, but countries like South Korea were ahead of us in terms of the infection curve, and we perhaps should have taken more notice of results like theirs and heeded the advice from countries like Italy. #PPE is a huge area of contention. It seemed obvious that this was vital not only to the #NHS but to everyone in the Care sector, and in fact to anyone who had to interface with the public or work-colleagues during this pandemic. Now I understand that there can be issues setting up distribution channels quickly, but that’s what we pay people who do our emergency planning to prepare for. What upset me more though was officials stating that there were no problems getting this PPE to our keyworkers, then hearing that @NHS workers and #carers were dying because they didn’t have adequate protection. It was like sending soldiers to fight in battle, then sending them off to the front-line without their weapons (sorry not the best analogy).


The amount of research into a vaccine for covid-19 is heartening, and the partnerships between Universities and the private sector to fast-track the usual development and trial process is just fantastic. The vaccine will no doubt be the key to developing our ‘new-normal’. What the new normal will be when we get to the point of easing the lockdown is up for debate. I think the wearing of facemasks will become common-place. The opening of restaurants, shops, hairdressers etc will be interesting and I am watching with interest how other countries who are easing restrictions are doing this. Once an effective vaccine is in place then I think that’s when we may see quite a rapid bounce-back for travel, shopping and social interaction in general. However, if there has been anything positive from this crisis, it has been the benefit for the Environment,. I hope that we take cognisance this in plans for life after lockdown. Cleaner air, cleaner waters, repaired holes in the ozone – these are major benefits both for our health and the health of the planet, so are not to be ignored.


So how has this lockdown affected me as a #Fabry patient? Well, I am officially on a treatment-holiday because I am shielding. Basically this means that I will not have #ERT for at least the twelve week period. Now this has pros and cons.


On the plus side, the homecare nurses aren’t coming into the house so this reduces any potential exposure to Covid-19 for both patients and nurses.


However, twelve weeks is basically six infusions missed. And this flags a number of issues:

  1. Will the missed infusions affect the amount of Gb3 in my body?

  2. If so, will this have an adverse effect on my health?

  3. Will I have an increased likelihood of an infusion reaction when I start back on ERT? (I would say this is particularly important for those on Fabrazyme treatment, as the infusion reactions can be severe)

  4. Will I therefore have to have my ERT treatment re-started in hospital, or have my home-care nurse stay for fully-dependent treatment when my ERT re-starts at home?

I have a telephone appointment with a specialist nurse next week, so I will ask them these questions and let you know the responses.


The #MPS Society has recently sent out an email to their members with a link to an online symptom diary on their site, asking patients who are taking a treatment holiday to log any symptoms they are having during this period. They will then collate the results for review. If you haven't had an email, you can, I believe, still access the diary through this MPS Society link.

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