Advice for patients / parents / guardians

Dear Leukodystrophy family

A number of you have been in touch looking for advice relating to the global Coronavirus (also known as COVID-19) outbreak. The information below gives some practical general information and links to useful reliable websites. Please ask your own metabolic or neurology team if you have a query or concern about your specific condition.

We suggest patients with leukodystrophy take advice from the information for those with neuro-muscular weakness and chronic neurodegenerative conditions dependent on the severity of their symptoms.

It is now clear that this is a rapidly evolving situation with advice from the government / NHS changing regularly. To avoid confusion and the risk of out of date information on this site, we have now therefore removed any information that is already given nationally and therefore applies to all individuals. We urge you to keep up with current advice on the websites below, or by listening to reliable TV / radio broadcasts.

The most up-to-date information about the outbreak, including information for returning travellers, can be found on the gov.uk website.
https://www.gov.uk/government/topical-events/coronavirus-covid-19-uk-government-response.

The NHS also has up to date advice on what to do if you’ve recently returned from travel abroad, symptoms to look out for, tips to avoid catching or spreading the disease, and action to take if you become unwell.
https://www.nhs.uk/conditions/coronavirus-covid-19/.

You may have received a text or letter telling you that you are in the highly vulnerable group, advising you to use the shielding regimen, this may not be possible if you are caring for a child or those who are severely disabled, so stringent social distancing measures should be followed. If you have carers coming into your home then it may be a good idea to ask if you can limit the number of different carers you have, so minimising the risk. Please read this guidance from Dr Robin Lachmann. (NHS England and shielding – Approved)

Precautions to take for individuals with an ‘emergency regimen’

Some people with leukodystrophies are at risk of worsening (decompensation) of their condition if they develop a viral infection, for example those with Addison’s disease (adrenal insufficiency).These individuals may have specific medications to keep at home for use in the event of illness. Please contact your endocrinology department for advice, if you are worried. (read : Steroid guidance re corona virus)

Practical steps to take:

Check that any medications or supplements that you keep at home are in date (not expired for use)
Keep a copy of your written emergency guidelines handy to show to other healthcare professionals if needed. Addison’s disease guidelines.
Keep the contact details of your endocrinology team handy e.g. on your mobile phone

Individuals who are prescribed replacement steroid hormones should follow their ‘sick-day rules’ if needed
Buy a thermometer if you do not already have one at home

Do not attend any routine outpatient appointments at the hospital but instead contact your doctor to discuss if another form of appointment is needed e.g. by telephone or video if available.

If you are unwell

If you feel that you are unwell and need to attend hospital for immediate / urgent treatment for your condition, or are advised to do so by the NHS 111 team, then please do this. Give the contact details of your specialist team to the hospital staff so that they can be phoned for advice.

Ibuprofen

There is currently no strong evidence that ibuprofen can make coronavirus (COVID-19) worse. But until we have more information, take paracetamol to treat the symptoms of coronavirus, unless your doctor has told you paracetamol is not suitable for you. If you are already taking ibuprofen or another non-steroidal anti-inflammatory (NSAID) on the advice of a doctor, do not stop taking it without checking first.

Paracetamol is the first line choice
If this is not effective, or you cannot obtain any paracetamol then ibuprofen remains the second line treatment for most people for a high fever (there may be some people with asthma or heart disease who have been specifically advised to avoid it).
Remaining well hydrated is important.
An adult who is otherwise reasonably well, may not require specific treatment (other than trying to stay comfortable) for a low grade fever.
In children (particularly younger children) – there is a risk of seizures and other complications if fever is left untreated. So treating the fever would be considered the important thing to do (as the risk of uncontrolled fever would be deemed higher than any smaller potential risk of ibuprofen).
Specific higher-risk groups

If you fall into one of the groups below, then you will be considered at higher risk of developing complications from COVID19.

Please stay aware of the latest NHS advice for high-risk, more vulnerable patients –

COVID-19 stay at home guidance for households with possible infection.

You are over the age of 70 years
You have documented immunodeficiency or are taking prescribed immunosuppressant drugs (such as after a transplant)
You are prescribed home oxygen therapy
You are using CPAP ventilation or other non-invasive ventilation at home
You have a tracheostomy (an incision in the windpipe made to relieve an obstruction to breathing)
You are known to have obstructive sleep apnoea or upper airway problems
You have moderate to severe asthma
You have severe respiratory or other neuro-muscular weakness
You have underlying cardiac problems – such as heart failure, or have an implantable cardiac device/defibrillator
You have significant kidney failure (are on dialysis or awaiting a kidney transplant)
You have had a splenectomy

If you have other specific queries or concerns about your condition then please contact your own doctors to discuss these further.

We are advising those who are at increased risk of severe illness from coronavirus (COVID-19) to be particularly stringent in following social distancing measures.

Government guidance on social distancing for vulnerable people

“Of note to our families is the following list of conditions which includes chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy – although leukodystrophies are not specifically included, probably due to the fact that they are rare we would advise that you should follow the advice for the conditions listed as they have very similar symptoms to leukodystrophies.”

Karen Harrison – Alex TLC Support Manager

This group includes those who are:

aged 70 or older (regardless of medical conditions)
under 70 with an underlying health condition listed below (i.e. anyone instructed to get a flu jab as an adult each year on medical grounds):
chronic (long-term) respiratory diseases, such as asthma, chronic obstructive pulmonary disease (COPD), emphysema or bronchitis
chronic heart disease, such as heart failure
chronic kidney disease
chronic liver disease, such as hepatitis
chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy. Of note to our families is the following list of conditions which includes chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy- although leukodystrophies are not specifically included, probably due to the fact that they are rare we would advise that you should follow the advice for the conditions listed as they have very similar symptoms to leukodystrophies.
diabetes
problems with your spleen – or if you have had your spleen removed
a weakened immune system as the result of conditions such as HIV and AIDS, or medicines such as steroid tablets (link to Society of endocrinology guidance) or chemotherapy
being seriously overweight (a body mass index (BMI) of 40 or above)
those who are pregnant

As per current NHS 111 guidance, do not go to a GP surgery, pharmacy or hospital if you develop symptoms suggestive of COVID19.

Self-isolate for 7 days from when your symptoms started.

If you are still concerned, seek individual medical advice by contacting NHS 111.

For a medical emergency dial 999.