New guidance from NHS LSD Clinical Centres

Posted On: 07/05/2020 Recently Posted!

Two documents have been compiled by the LSD Collaborative with guidance from the Specialised Centres. These are PDF files that you may read online or print out for reference and to share with friends and family.

This is a useful guide from MIND to help us maintain our sanity throughout this difficult period:

Coronavirus (COVID-19) Advice (16th March 2020 Update)

We and the LSD Collaborative has helped to review the guidance below for people living with an Inherited Metabolic Disease (IMD), including Pompe disease. Please click the link to view:

Advice from the British Inherited Metabolic Disease Group (BIMDG)

COVID-19 is likely to be with us for some time, and so as well as the general advice to everyone, we would urge our vulnerable group to maintain a healthy immune system by following some of the guidelines given by the Harvard Medical School:

How to boost your immune system

In particular we would emphasise the following extracts:

  • Don't smoke.
  • Eat a diet high in fruits and vegetables.
  • Exercise regularly.
  • Maintain a healthy weight.
  • If you drink alcohol, drink only in moderation.
  • Get adequate sleep.
  • Take steps to avoid infection, such as washing your hands frequently and cooking meats thoroughly.
  • Try to minimise stress.

We hope that you all remain healthy throughout this difficult period, but if you have any particular questions, we would be very happy to pass them on to our national and international experts, please use the link at the foot of this page to contact us.

COVID-19 Webinar Recording and Presentation Slides

A recording of the Webinar held on March 23rd 2020 is now available from the Facebook page of the LSD Collaborative.

Pompe Support Network is a proud and active member of the LSD Collaborative: The slides used in the presentation can be downloaded and shared separately. Please do encourage others within the community to view the presentation.

COVID-19 Webinar Recording

COVID-19 Webinar Presentation Slides