WDO Webinar 1: COVID 19 and Duchenne & Becker muscular dystrophy

WDO Webinar 1: COVID 19 and Duchenne & Becker muscular dystrophy


hello everyone thank you for joining
this webinar on such short notice my name is Suzie-Ann and I’m the communications
coordinator of the world duchenne organization and today we’re having this
webinar to facilitate the questions to clinicians on the current coronavirus
outbreak and how this might affect Duchenne and Becker muscular dystrophy
community so I will be doing this together with Elisabeth Vroom who’s the
chair of the WDO and we will also be here to moderate the questions and
discussions at the end of this webinar so more about that in a minute first I’d
like to explain how you can join this discussion because you will be
automatically muted upon joining so your keyboard is your voice so would you like
to ask a question or give almost like a broad overview of what is happening in
your country at the moment you can do this via the chat option when you click
in the top right corner at the speak bubble or in the middle if you’re on the
app and after the webinar has ended we will collect all the questions that we
haven’t answered during this one and do it in a follow-up webinar so this
webinar will be recorded and be made available for you for sharing after
together with the report that you can disseminate with your families and
clinicians as well so for that I’d like to give the microphone to elizabeth who
can open this webinar and do the introduction i’m a muted welcome
everybody to this to this webinar which was pulled together because we received
so many questions from parents in different countries all getting answers
or even worse not getting answers to that question about coronavirus what
does that mean for our boys is a vulnerable group and if so how can we
then protect them better is there any way to do so we were also concerned of
course about what is appearing online as news like what would help could help
what medication you should take or take extra
all that together me that we fell that we could with the sources of information
we have provide you with some extra information so you can go back to your
groups and discuss I think the corona virus is spread to all of us and first
of all I think we should realize how much the families in Italy already have
suffered and now with the lockdown in Spain that is also a very serious
situation however we see in other countries that we are more or less
following the same path so it’s not that we really feel that it’s only a few
countries it’s on our it’s really on our doorstep for all of us so what I really would like to state is that we have to share
as much information as possible on the other hand don’t panic as being quiet
and being able to think properly is the most important thing we can do for our
children just common sense think about what we can do and not kind of run after
all kind of fake news so first of all Suzie-Ann will tell you a little bit
about what we know about corona COVID 19 Suzie-Ann yes that’s right
I think it’s better to give in the some kind of general information before we
dive into the the more specific information so most of you might already
know this information but just a broad over overview about the COVID or the
novel coronavirus so what we know is that it’s a
respiratory virus that can be spread by the little droplets or aerosols that you
have when you coughing or sneezing but it’s also that this virus can survive
for hours on hard surfaces so you actually don’t have to see the person
who is symptomatic and spreading and especially the older population above 60
years and the vulnerable population are at risk and this Wednesday the World
Health Organization declared the outbreak to be a pandemic meaning that
this disease affects the whole world so if you’d like
to know more about this whole virus in terms of how it started and what the big
flu pandemic of 1918 has taught us when it comes to how to suppress further
dissemination of these virus I really recommend this Stanford webinar called
coronavirus for non virologists and I’ve attached the link in the slide if you’d
like to know more so I would like to give them make back to Elizabeth who
will explain more about the corona virus in relation to Duchenne and Becker
muscular dystrophy yeah well we are in a kind of complicated situation which we
also saw in the preparation of this webinar as most clinicians say well we
love to think with you but we are not a corona expert so there are no experts
who are in an expert on DMD and corona or on the combination as we have
not seen it yet in Duchenne boys and also in from the Chinese groups and
Nicoletta has reached out to them we haven’t heard about any Duchenne boy
with COVID or man or I must say could be girl as well so everything where I say
man or boy you should ever read or listen like girl
as well so we haven’t heard anything so we don’t know there’s no experience
there are no models we can’t say if it’s if they have a worse trajectory or not
we just we just don’t know so that is difficult to start with
however in the context of what we do know what is known about virus and what
is known about DMD in general the clinicians were willing to give us
their thoughts like to respond like it what is wise what would you do so just
to make sure that you won’t see this as a written in stone or like the guideline
for corona in Duchenne it is just based on what we know it’s very clear that in
different countries the situation is so different than the rules will never
apply to everybody it’s really different if you’re in a country with shut down or
that you’re in a country we’re only like two or three people
are affected so keep in mind there’s always the the national rules which is
are very important to follow in your country but on top of that we pick the
brains of people who know a lot about Duchenne muscular dystrophy to help us
kind of being the parent we want to be for our children and do what they really
need so with that we can go to the first to the next slide so that’s the
questions and answers to the clinicians we have asked for clinicians to respond
on our questions two of them offer to be in this webinar now I see professor
Mercuri is online professor Goemans is on call in her house
in her hospital today so she will call in as soon as she’s available and we
already have some answers in writing from her we have received them and
already put them in the slide so if she would not be able to dial in or dial in
later at least we have her comments so the first slide the first questions are
kind of what can we do best for our boys and man again it could be girls we
cluster them around themes these seven themes like what are the best ways of
minimizing chance of infections and so on and then for every subject there are
some questions and we ask them as well so knowing that professor Mercuri is
there thank you so much Suzie-Ann will unmute you and probably
we could already go to the first question is a base hey so the first
question and and that’s the question we see over and over is should I take my
son from school well I think this really depends on what’s going on
in the individual countries in Italy the schools have been closed for weeks and
we believe is a is a is a very good thing and it was a very sensible things
to do considering how the virus was spreading that in general terms there is
a problem with children because children are likely not often affected by this
virus the the numbers go from one to three percent only fewer studies are
reporting more than one to three percent and also they can be totally symptomatic
they do not always develop all the signs that are more often seen in adults
because of this many children can be contagious because they are they are
carrying the virus with a few symptoms and some of them even without symptoms
and therefore the risk of being infected school is is relatively high so in the
countries where the virus is still not present or whether there are very few
isolated cases this may not be an indication but for all the other
countries where there are already a few cases around not going to school may be
may be a good option thank you thank you so much of course sorry this of course
is tailored the country to the individual you know it’s a it’s a it’s
not we had a lot of discussions in the last week with Italian parent project
and who have been involved all the clinicians in discussions about steroids
and schools and so on and again this will apply to all the
other questions and answers there is no general rule that can be applied every
time this has been really tailored to the individuals and conveyed individual
countries but in general terms schools are are can be a problem in the
countries were the very basis around thank you thank you so much and then is
that then the next question was is being is being on a plane
sorry for the slides I think Suzie-Ann I are together moving the slides at the
moment it’s being on a plane a high risk to catch the virus well I think we all
agree that traveling at the time for the time being is not a good option
irrespective of the time on the flights there is the time in the airport there
is the time together with many people in a queue in the airport and the air in
the in the flags is supposed to be filtered but still you’re sitting not
very close to other people and the possibility of getting an infection is
much higher so in general terms this is no time for holidays or or unless
something is really really really strictly necessary right I would like to
ask the people who are now in the call who have their cameras on to switch it
off as that will be an load to the system thank you so much can we check
also if professor who models is already online or not no I’m afraid she’s still
seeing patients okay then then we can go to the next to the next question and
that is how to follow instructions if resources are really getting very
limited I think a lot of people they are meant like when we don’t have alcohol to
wash our hands but there are some answers there as well can you tell us a
little bit more thank you so much well soap and water are very important
because very often people rely on commercially available liquids which do
not contain the appropriate level of alcohol which should be quite high so in
general terms cleaning hands mostly and but also surfaces and handles everything
which can be touched is is a general rule that can be applied by everyone
even when you know soap and water and water do not cost much so even when
there are no resources washing hands and washing whatever is is
is suppose is likely to be touched is very very important this is one of the
best weapons we have to fight the deification thank you so much and then
we also already put on this slides that in general as Professor Goemans said in
general just hygiene is so very important for helpers caregivers and
also that’s my favorite make sure that you also clean services and and the
handles and touch screens so that you try to avoid any contamination with them
with the virus so with that we could go to the next next slide and that is good
supplementing with vitamin C vitamin D or probiotics help any way people are
asking what can I do everybody loves to do something so
that’s the question well this is a general question that we are asking when
there is a flew around and where there is any sort of infection there are some
there is no evidence that any of the vitamins will specifically you know in
general terms healthy food with vitamins and and minerals and so on are always
useful in general terms but we cannot really say that if if that we have to
take specifically these that and we will be much stronger against the flu or the
corona virus or or or or any other value so there are some general rules again of
common sense that children should eat fruit and vegetable center whatever
bring some vitamins and the vitamins you see is useful but but it’s not a
medicine it’s not something that will strongly defend against the Bible so
it’s this is not that there is evidence that if we do which we will be much more
resistance okay thank you so much and I think that’s exactly the same what the
professor Finder there and professor Goemans said about
that hygiene is the most important being healthy in general but don’t follow as
stated here all the nonsense advertisement online just stick to a
normal healthy program and make sure you get all the normal vitamins and
supplements right so but then of course we get the next step we hope nobody will
be infected and it will stay like this but what if what if the boys get
affected what do you think it will take longer to them to to be in good shape
again what are your thoughts about that well again we we do not believe that the
the steroids those we give creates a large immunosuppressant action and so
the general rule we had a lot of discussion in Italy but and it was very
glad to see that professor Muntoni and professor Finder and and and
Natalie all agree that we should not stop steroid and so it’s I think in
practical terms one has to be practical that the very
young children are very rarely affected we are more concerned about the older
boys but it’s also true that the older boys also hardly receive the full dose
of steroids that we get when we start the treatments by the time they are in
their twenties or you know in their late teens they all have a much lower though
so this is an extra element that should encourage not to stop steroids
thank you so much we see that meanwhile professor Muntoni also joined the discussion could you unmute professor Muntoni hello
afternoon oh you double mute it now so sorry
so good afternoon no would you like to add something to the discussion which is
already started by Professor Mercuri I know I can you hear me yes we can no
good afternoon the you know I bring with you jr. and I think that the you know
clearly the reality is that there are risks for everything and the risk
benefit is what should dictate everything we do as in every aspect of
our daily activity so thing to stop the steroids will certainly be very
detrimental because there will be a lot of problem related you know he’s not
possible to stop the steroid abruptly anyway even if we wanted and they are
clear problem related to the admission of steroid including the fact that
during an infection for several months children if the steroids are stopped
still are not able to fight infections properly not because they are
immunosuppressed but because the adrenal gland is
suppressed so if children get unwell even during the phase of stopping the
steroid the master e6 they ruin anyway so that doesn’t appear to be a very
sensible approach I think that the it is true we use the roads as
immunosuppressant in people with a number of neurological disorders the
dose that we use immunosuppressant are higher than the one we used in children
with steroids and I think as I am NOT an immunologist but I have been working
with children with DMD now for you know probably at least 20 years with children
on steroids and I cannot think of a single occasion
neither in my country no internationally where they have been a particular
condition that has been associated with patient with Duchenne having severe immune
suppression and therefore I think on one hand we have a severe and certain risk
of stopping steroid abruptly of the other we have really very little
information on the fact the people with DMD if a non chronic corticosteroid are
ever significant risk of the common infection you know people don’t get
necessarily a very severe flu we want to evolve through but these you know people
that do not have generalized disease and body shut down as a result of flu even
if they do not get the vaccination so let’s use the knowledge we have and the
common sense and therefore in short Eugenio is right okay thank you so much
thank you so much and then to go there was one question we kind of would also
have lost your input as you live in another country than there then the
Italians and the Americans what would you recommend in terms of school would
you say what would you recommend for the children in terms of going to school are
you asking Francesco yes sorry I’m not I’m a bad moderator sorry um well I think that to some extent
and the the advice will be largely that depending on which country you are and
what is the risk at the individual time point I think again I think we probably
need to to step back a little and and think that in due course probably the
majority of the population will be exposed to the coronavirus in a way of
the other and it’s not going to go away immediately so I think that the the if
you like the issue I suppose is what is unhelpful is for people to develop the
disease at that time there is a lot of pressure
in the hospitals that I think is the reality now there will be difference in
different countries in based on what is the peak of the if like of the pandemic
so I make an example in the UK probably this is a good time to go to hospital
because is four weeks before or probably more from the peak of the infection so
this is a time when there is capacity these things may change so I don’t think
that you get a unique vocal I don’t think that there is a wrong and right
answer unless you take it into consideration the timeline of where you
are with the spread of the infection so I think in general and the if children
have additional comorbidities and you know I make an example if a child with
Duchenne had asthma if a child with Duchenne had or you know an older
teenager had cardiac disease if the world you know if there is a child with
significant hypertension and any aspect that will increase the risk
certainly advice because that risk in that particular child would be at about
the average at the moment as of today I don’t think it makes a huge difference
whether individual child in the UK is taken to school but at the same time
families know their particular child they may know whether the particular
child compared to two if you like other children are very significantly increase
in risk I think as you mentioned the probability that a people with the DMD
will develop a very severe disease it’s probably not very different from that of
the general population so a young child with DMD will have a very similar
risk of you know the respiratory function of a child of age with DMD
on steroids it is a hundred percent so the the risk of that particular child will
not be very different from that of a child without DMD
there will be different in all the people off with comorbidities then I
think the more you help addition address the more one has to take that into
account of course this advice may change if in three weeks time there is no space
at all in hospital and therefore even if a very small proportion of people with
indeed may develop complication when you clearly want to access hospital so
probably this advice will change but you know I don’t think people need to
consider that advises necessarily contradictory advice may change based on
where you are in the curve of the infection thank you thank you so much
really thank you so then we go to the next question
I understood that professor Mercuri has to leave in ten minutes right is that
true and professor Goemans said that she has an emergency in her hospital so she will
join us or later or not so the impact of steroids maybe we should first ask the
question then to Professor Mercuri well I think we have already discussed
is that the we do know they producing an immune response but it is a mild immune
response especially in the older children who receive it generally
receive an overdose compared to the younger one so this this is not a
particularly cause of concern okay so maybe it’s a good idea then unless
professor Muntoni wants to say something to go to the next question
oh nothing – uh okay then the question was and I think my it
might also be mentioned already a little bit do do patients have a higher chance
of catching the virus I think we discussed a little bit about younger
children but maybe it’s also good to see it a little bit more on in the context
of the little bit older boys or men who wants to answer first well I will do
it first because I have to go in a few minutes I mean even in a way it is true
that boys with Duchenne especially in winter do try do not get out or see are
probably not in crowded places as much as their ears so in in in in a way you
know did in Italy were saying how easy is for this virus to spread you know in
some regions it has been really scary how easily it has been spreading even if
some precautions had been taken or at least part of the proportion would be
taken so in a way I think it’s not a matter of if the if a Duchenne boy has a
higher chance but it’s a matter of what is the chance that this children will be
part of crowded places will travel a lot so we’ll go into you know pubs and bars
and restaurants in the countries where these are open or in places where they
are in contact with many many people so for the time being there has been no
evidence from China or in Italy that Duchenne you know that we had any child
with disability no foundation we in we have been monitoring a group of
other disabilities as well and there is no evidence whatsoever that’s neither
children or teenagers are more affected with a disability or using a ventilator
or you know with other things may be more affected and another so I think
it’s more a matter again hygiene avoiding crowded places and and so on if
these rules are respected then the chances are not are not higher than the
others are actually lower than yeah thank you so much is do you want to add
something yeah I think that he the again I completely agree with you jr. the risk
I suppose again thinking about risk benefit the risk for a individual with
DMD will be probably that of coming to hospital and I’m not suggesting don’t
come to hospital at all if there is any problem but we are now turning into
telephone consultation for the time being for not just for the Duchenne
patient but for condition for which waiting another four months or three
months is not a disaster and therefore I think the issue may be that of considering and not is only not only in
the coming to hospital but is also how people come to hospital for example in
in London people may have to come by a public transport and so on and so forth
that’s probably and you know many of the public transport are very very very very
busy they are still very very busy so I I think that this what if there was a
scheduled appointment for a child on chronic you know in a stable phase of
the disease I think the parents usually know if there is a problem there
then doctors and physiotherapists so if things are going well or they’re not
very different I would probably put postpone an appointment to hospital and
and resort to telephone consultation this may not be appropriate in the
individual circumstances if there are critical appointment if a child is being
recently started on steroids and you know just again use your common sense but
I basically reduce the risk the one you can the public transport is public
transport probably is not a good idea visit to doctors if you are well is
probably not a good idea either okay thank you so much thank you thank you
and then then then a question i I think might if we listen to everything might
be even harder to answer is are they at high risk or vulnerable people
most likely to die as you know like in every country you say this these are the
basic rules and then we have the vulnerable people and they should to them
apply other rules so I think that is what families are wondering do we
consider our children but I think you have answered that already more or less
are they consider the more vulnerable people like the elderly people who die
at the moment well this is what is weird with this virus we had a telephone call
yesterday with our our colleagues in Milan who had many more cases a few
weeks before the rest of Italy and they have just a survey a paediatric survey
and it’s very strange that unlike other infections unlike other virus unlike you
know any other thing in the past where there was a lot of concern for children
who were immunosuppressed on you know chemotherapy etc etc this this virus
doesn’t say doesn’t seem to affect particularly children immunity phase
or or or you know other children who are normally identify as fragile and that
much higher risk of course if we’re talking about older boys or young or
young the adolescence or earlier young adults who have a very reduced
respiratory capacity and a cardiac problem of course the level of risk may
be different but for otherwise for the younger population doesn’t think that
this this virus has a disorder that doesn’t like you know that doesn’t seem
to affect particularly fragile children which is a very peculiar and different
from other viruses that we have around thank you so much professor Muntoni would
you like to add something or should we go to the next question can you unmute
Suzie-Ann can you amou professor Muntoni he’s not muted so I think he agrees to
going on to the next slide sorry I lost the page no I agree I think that again
the children I think the risk will be largely dependent on the respiratory
function and again the good news now with corticosteroid is that the
respiratory function remains much higher for much longer of course in the late
teens and so on or if the respiratory function is significantly compromised
then yes that individual will be a higher risk than somebody with a
completely normal respiratory function so I think that risk may be stratified
based on how significant is the respiratory problem and if there is any
hard problem but for people in whom there is a good respiratory’s
and heart function is within the normal limit that risk is probably not any
different from that of the other children and as we heard from Eugenio
this risk or reason that we do not understand is not zero but compared to
the you know my age or people who are older a significantly lower thank you so
you better take good care of yourself because we need you okay
so sorry I have to go thank you so much thank you so much
now then so now you’re all alone it’s not only is still in in emergencies so
then there has been a lot of discussion also online on ACE inhibitors as parents
saw that the ACE receptor was involved and they thought oh maybe we could give
ace inhibitors as treatment there were people posting these websites on the
other hand there were people think like oh maybe not so good so that this really
has been a topic of the last week amongst families and in social media how
to see the role of ACE inhibitors in this this disease or in this virus
infection and you sent us this slide saying basically don’t change anything
right could you explain a little bit about that well I can you hear me
because I just changed the my connection can you hear me okay that’s fine so well
I think this is quite interesting because is it’s not only politics that
go forward with fake news but also the health system so all these started
because there had been some scientific correspondence regarding the fact that
there is an association of the corona values with the receptor that is used by ACE inhibit
inhibitors I think this is you know is that the danger of people picking and
choosing what is the truth is that we’ll say well that has been published as a
letter was just a suggestion actually there was no experimental proof then we
became quite clear that whoever wrote that letter does not have understanding
of what is the biology of this receptor and actually had confused the different
type of receptors as simple as that and therefore the letter that was
written by this was I think the Italian hypertension society in is reflects what
has been rebuttal in the scientific literature that sometime or somehow
doesn’t get the same exposure as the original scary suggestion that there is
no evidence not only no evidence because they at the moment it just makes no
sense what the suggestion that could be a if like an interaction between these
two and therefore coming back to my point of risk-benefit you do not stop
something that we know is beneficial for people in DMD for the theoretical but
also as all recent suggestion indicate even completely wrong evidence that they
might be a negative interaction so I think clearly again if there was you
know none of us has shares in companies that sell ACE inhibitors so at the
moment that there would be a concern you will hear from us for sure but until
that moment the scientific advice and the evidence suggests don’t be worried
about that at all thank you this really will help the community so
much you can’t believe this thank you thank you so much
and then the next question was about should I get a cough assist even if he
doesn’t need it I don’t know exactly what people mean with us needed but
either answer it but I think you could say something similar or have an opinion
on this well III think that the I think that
unfortunately I think the I agree with what Professor Finder indicates
unfortunately if one is going to get a severe problem the cough assist will not
help I think the this virus give rise to a
particular type of pneumonia that is called interstitial pneumonia and that
is a very different type of pneumonia from other types of pneumonia when fluid
accumulates and where work off may not help so in actual fact I think not only
is unfortunate for this particular subtype of pneumonia cough assist it
deserves luckily not particularly common type of pneumonia but these are not the
type of condition you know typically they will be associated with a very dry
cough and you still get a very severe pneumonia because the pathogenesis is
completely different so I think that the I think the cough assist may help if
people get some super impose additional bacterial pneumonia and so on and so
forth but I think the this will be again for the discussion we were saying before
in risk-benefit the probability this will happen is remote it’s not zero but
is remote and I’ll tell you if somebody is at a stage where this will be
required I think that would be the stage you really want to be in hospital well
it’s not having a being trying to learn how to use your offices that probably
will not so 99% of the problem during that particular infection so I think for
this particular cough assist is very helpful for other things but
unfortunately I don’t think we’ll really make a big difference for this
thank you so much thank you sorry that we keep asking you there are only a few
more questions I hope so and that is our patients on invasive ventilation less
likely to contract the virus so the pulmonologists of the Leuven
University have responded to that we see there’s a little discrepancy in the
answers about the filters as it’s not here but I think somewhere else
professor Finder says like the filters will be good enough to hold the droplets
where the pulmonologist more looks at the size of the virus versus the
bacteria and says bacteria filters on non-invasive ventilators are less
efficient for viruses as viruses are much smaller so that is I think a
question a lot of people would like thinking at home at least let’s speak
for myself we are thinking about it like do these filters help yes or no and what
do you think well I prefer to say that I do not know and I prefer not to stick my
neck when I don’t know I will need to I didn’t have enough time to search into
this I supposed the similar principle as everything still applies a virus still
needs to get to this to that particular filter and and I suppose the general you
know clearly an individual with advanced age and disease progression who is an
invasive ventilation will need to be considered a individual at risk and
therefore the both isolation procedure whenever appropriate
and the gene procedure to avoid that filter to get any virus would be what I
know I can do and I would certainly do it I think I I would need to check I do
not and not knowledgeable enough regarding the virus particle
they feel the ability to cook to avoid transmission I think that it was the
same for professor humans that’s why he asked her for knowledge and I think yeah
thank you so much that is the effect and I think that is something you
already have spoke about already what is the effects on hospitals and hospital
visits is there anything you wanted to add what you said before this if they’re
basically people saying if you don’t have to go don’t go but I said that but
you say like in the UK your earlier in the curve so that might be different
well I think that it you know if we are early in the curve at the same time the
we need to you know these are the things we can do and in a way reducing the risk
reducing the unnecessary risk still appear to be sensible coming to hospital
probably has because of the issue that I described before a higher risk than that
particular child going to school and the on the whole the advice is that we are
just implementing us from Friday and so this is you know Friday at least in my
hospital this may not be the same in a very hospital is if the if it is a
scheduled visit the child is well the child is on you know it’s well known to
the family to the team and there is no new finding touch base by telephone to
confirm whether a physical visit is yesterday I think we can I you know
families know these children if a family or a mom or dad are concerned about that
particular child that there is a new finding then risk benefit will suggest
bring him to hospital but at the same time if the child is completely well we
will do well with the telephone consultation as we speak and this is the
advice will be given on Friday yesterday and therefore from next week that is
what we will do we will still see all new patients and we will still see all
the patient in whom there is a I make an example say that I know that a particular child with Duchenne has high blood pressure and needs to be checked
and needs perhaps those adjustment then I think I would definitely like to see
the chart but a child who has been well who is on the whole stable for the last
you know three years or whatever I think that child probably will ask him with
touch base with the family but ask them not to come thank you thank you and
there’s no medication wish to take do you see any reason for that now I think
that he I I like the suggestion of professor Finder but this is a general
one and I think that the is fundamental the families know about the fragility of
people with DMD in case they get on well and the two have to know how to
deal with the stress those of steroids that’s an important point up so I think
basically for our people in if you know DMD is only to have enough steroid and
ensure there is a stress dose of steroids at home apart from that again
people with DMD you know you will know at least in the early middle stage
of the condition may be different in the you know in in all the individual who
are fully regulated and so on and so forth but they they great majority of
people became the apart from the usual medication is not that they need
anything in addition to that so be certain that there is enough for for
is one of the parents had to be in lockdown and so on and people said that
again it may be possible to arrange administration or delivery of
drugs and that is also one thing we are exploring with our pharmacy in case
individual families had difficulties to come and collect drugs but common sense
would suggest get some cover for the steroids in case you’re not able to come
every every week to collect it okay thank you so now all the
responsibilities are on you this is this is about so we received many questions
about vaccines like the whooping cough and such and we also had questions
about the new pneumococcus to first the vaccination against human virus and
sorry not virus the no more vaccinations sorry and we saw in a lot
of publications like the fragile people the vulnerable people they should
make sure they have all these vaccinations we sent them family as well
it’s important to have them in general you know always it’s in the stance of
care but now they ask is there an extra reason to go for these vaccinations in
the light of the corona virus well I suppose the theoretical risk is to get
both of them at the same time that would be undesirable I think that would be the
only reason is a bit like the flu you know there is no mention here about the
flu but of course flu is avoidable there are vaccinations and ideally you would
not like to have the flu and the coronavirus of the same time so I think that the flu
is now better understood although it is something is still not completely
convinced that it’s useful and there are the standard of care for the I think
moving normally not is in most country that would have been dealt with
already pneumococcus is not mandatory if you like
but I think it is recommended in this group of people I think that they point
to that unfortunately we will still take several weeks before full recover is an
important one but there is no particularly reason one would not do
it now there is no no it’s not going to prove
do get the vaccine you can look it from the perspective to get the vaccination today even if they are fortunate event
somebody will get the coronavirus in two weeks time or three weeks time
should not put that particular child at higher risk
anyway so i see no reason why not to do it basically okay thank you so this is then the World Health
Organization apparently the Duchenne community is not the only community
asking this question like do you need this vaccination or not and it’s stating
the same as we discussed before although the vaccines are not effective
against this virus still vaccination against respiratory illness is highly
recommended just to protect your protect your health so now we come to the
discussion I have to discuss second with Suzie-Ann we have some questions online
but most questions I think are answered already I guess Suzie-Ann has gone while we
were talking through there through the slides and through the questions and
other things you feel we still should ask and are not answered yet yes I see
an interesting question from Gary and he says that what about siblings that when
they do not have Duchenne should they stay at home as well what how would you answer this one huh
and I suppose you asked I think I should have done thank you Eugenio
I mean in a way the question I’m not entirely sure what the question is
so that is the question what is the risk for I think the fundamental point is the
risk for children is in very very very very smooth is not zero but it’s very
very very small so if the question I mean
paradoxically the risk may be more for the grandmother or a grandfather in that
family and it is how to manage that risk so I think the team the I don’t think
you can lock down at this point in time a family but it may you know if an if
you live in a country where any people of the exposure suggest that for example
children should not go to school and then you have then I think you should do
that if the if your child does not have a particular risk and the advice at the
moment is not to keep them to school out of school they I don’t think there is a
practical reason why you should not do that
I think this advice may change with the higher level of diffusion and so on and
so forth but I am NOT going to indeed to have a siblings change fundamentally a
child and everyone Sorry Sorry family spelled as we got these questions
as well I can my let’s say healthy whatever is healthy child but my
Duchenne child bring in the virus in our home that is kind of how I think these
questions was put like what is the risk on the other hand I know like in this
country they say kids better go to school then stay with grand parents because they might infect their grandparents who might have a severe
cause of the disease so that is I think there’s a lot of discussions about that
anymore in general well if it wise to have children being always the
grandparents or at school and wait for whom is the highest risk then yeah so so
I think with this we will close these discussions thank you so much also that
you could stay till the end we’re really grateful for that thank you so much on
behalf of all of really all of us and we will make report and then send it to you
so you can see it and and share that with our members and also the families
in all the different countries and translate it so thank you so much and we
will discuss a little bit with the families the wrap-up and also about what
we will do next but thank you for your time I think you don’t have to feel
guilty to to leave us now as well thank you so much thank you again he’s okay if
they can have a nice weekend thank you thank you thank you so for the rest can
you please hang in for another second or now five minutes because we will have
few things to discuss with you as well in fact I think we all thought over
these last days what can we do as patient organisation can we what can be
our role and I think we summed up a few things and maybe you have more but avoid
fake news and in a your community I think that is a very relevant one I
think share this webinar a report with your families and clinicians we want to
make sure that this is online available that we will have report we will really
encourage you to spread the best information you can get but meanwhile
respect local authorities and guidelines as we know for example from the groups
in in Spain and Italy it’s totally different than from the people who live
in other countries so keep respect to local authorities and the rules follow
up the WDO webinar on more specific questions
so we will have a we will have follow-up webinar next week we will tell you more
about that because the next question is of course what can what can we do as for DMD BMD patient organizations what can we do to help we
hope that this webinar helps we hope that recording of this make and making
it available for dissemination will help we will again do the report and the
translation we also will have a WDO feed a live feed and an a weekly
follow-up report webinar to update the community and we we can support everyone
we can but we also would like to hear like some groups already have been doing
things in that country one being is Ryan still online or is it yeah right yeah so
I am can you unmute Ryan maybe Suzie-Ann and just maybe you can tell about
webinar you are organizing next week and what you are doing in the US right Ryan
of PPMD are you there yeah I’m here can you hear me yes yes
thank you we are looking to schedule a webinar we’ve been in touch with our
certified Duchenne care center directors we’ve been in touch with the Center for
Disease Control and this webinar has actually been very helpful to sort of
give us additional questions to pose to experts and this is going to be a really
a day-by-day week-by-week thing where I believe we’re gonna have to put on these
webinars and continue to convene the community one of the other discussions
that has come up of course is how this is going to be impacting clinical trials
potentially so you know these are real issues that we all have to face and and
come up with solutions around so PPMD will put out some information on our
site and we’ll be sure to connect with everyone on the line and and share those
resources thank you so much thank you so much and we also know that lie
in some countries like Italy and Spain and also we did in the Netherlands we
already sent newsletters to families but we also discussed with our
clinicians like what would be wise to say so we all speak with the same tongue
as we say because nothing is so confusing for families as hearing
different opinions so then I think we’re we’re also gathering this so we really
have to help help each other and make sure we’re strong together so the next
now I really would like to give the the floor to a Nicoletta
Nicoletta is your mic open yeah I think so can you hear me
yes okay so hello everybody and we were thinking about you know providing to you
medical information and specific clinical information and we hope that
you know we got this goal but beside this important point for our community
we also have to think about our community and this really complicated
moment because we all know that everyone is absolutely worried about the
situation but we must be strong and we must be united and we are really a great
community so we can really you know show it and we can really live in the best
way it is complicated time of our life everywhere so in order to you know to be
together even if we are not together in the same place we were thinking about a
really simple social campaign just you know to be in contact with with everyone
and we created this hashtag that is #Home4Duchenne and #Home4Becker because
we know that staying at home in some countries like Italy is you know
absolutely obliged and they also in Spain but maybe this will be the same in
other countries but you know for our boy staying at home is extremely important
so the objectives of this campaign is to
involve the civil society on how best practice like staying at home and
respecting the other ones is important for everyone but is absolutely
fundamental for people with rare diseases serious diseases like Duchenne
and Becker and we also wanna you know create a stronger community during this
difficult moment so we are holding together and you know we can connect we
can be connected online in this way so what we ask you to do is to share this
information with your families and have every family you can share a photo of
them at home with the hashtag home for Duchenne or home for Becker and every
photograph will be posted on our social media and we will also create a final
video so this is mainly the campaign that we will start soon from tomorrow so
as soon as you have photos you can send it to me and Suzie-Ann and we will post it
or repost it from your pages so I think that Elizabeth maybe we have finished
it for today and as you have seen we will have a webinar again next week in
order to be in contact and from our side we just only wanted to tell you that we
are here and that we will you know survive survive this really complicated
time and because we are really strong and we are really a powerful community
so be please contact us and we are always here always connected

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