Advice regarding the new Coronavirus COVID-19 for people with 22q11 deletion syndrome.

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Dear Registrants and visitors to our web site,

The following document was prepared by our expert in infectious disease and immunology, Dr.
Nicholas Bennett. His advice follows:

 

Advice regarding the new Coronavirus COVID-19 for people with 22q11 deletion syndrome.
As you are probably all aware by now, the arrival of a new strain of coronavirus from Wuhan,
China, is making headlines. There is a lot of information out there about it, but most of it is
tailored to people without chronic conditions. Here is some more specific advice for those with
VCFS (aka DiGeorge, 22q11 deletion syndrome, etc.).
 
What is it?
COVID-19 is a type of coronavirus that is related to some types of the common cold and more
serious infectious like SARS and MERS. People infected with COVID-19 have displayed a very
wide range of symptoms, from practically no symptoms at all (especially in children) to severe
pneumonia requiring intensive-care. People have died from it, with the risk increasing with age.
There is also a suggestion that the mortality is going to be less in areas with better medical care
(such as the USA or Northern Europe) but as this is a new infection, data is being updated on a
daily basis, so we really don’t know everything about it yet.
 
In patients with symptoms, fever is very common, along with a dry cough and shortness of
breath (because of the pneumonia). Muscle aches and runny nose are less common, but they
ARE common with influenza.
 
What does this mean for you and me?
Because it is a new virus there is likely no existing immunity in the population, and so it will
(and has) spread very easily. It is likely that you will be exposed to it at some point, if not catch
it. Unfortunately, people with VCFS may be at an increased risk for complications and severe
symptoms because the T cells (that are important for clearing viral infections) are generally low
in patients with VCFS. Having said that, T cell FUNCTION (which is different than T cell
number) is generally pretty good in people with VCFS, and it may be sufficient to control the
virus – we just don’t know.
 
For those people with combined/B cell/antibody deficiencies, unfortunately it is unlikely that
IVIG (IntraVenous ImmunoGlobulin or SCIG (SubCutaneous ImmunoGlobulin) will provide
any benefit, because there won’t be any COVID-19 antibodies in the immunoglobulins.
Synagis (palivizumab) for RSV prevention likewise will not help against COVID-19.
 
People with congenital heart disease are likely to have more severe symptoms from any
pneumonia, and this would include those children with VCFS.
 
There is no vaccine, yet. The flu vaccine will help reduce the risk of getting the flu but won’t
help prevent COVID-19.

 
There is no effective treatment, yet – but several sites across the world are testing some antiviral
drugs that might provide benefit. As new information comes to light, we will try to update this
site.
 
What can you do?
 
Firstly – hand-washing and good cough etiquette are paramount! This virus seems to be spread
by large droplets (not simply airborne) and so should be fairly avoidable with care. If you or your
family members do get sick, then it’s reasonable to behave as you would if you had the flu: stay
away from others if possible, keep hydrated. You should NOT need a facemask, and it probably
won’t help. Keep those for hospitals who need them.
 
Secondly – COVID-19 has similar symptoms to influenza and other viruses. Getting your flu
shot will reduce the chances of catching the flu, which is a known risk for severe symptoms and
may cause concern that a person has COVID-19 even if they do not.
 
Thirdly – if you think you may have COVID-19 or have been exposed, call your primary doctor
or immunologist/ID specialist for advice. It is NOT necessary to be seen simply to be tested
unless they ask you to do so. It IS necessary to be seen if you have worrisome symptoms, such as
shortness of breath, feeling faint, weak or dizzy, or a rapid respiratory rate. That advice would
apply whether or not COVID-19 was an issue! A bad cough and fever by itself may not require a
visit, but it’s always ok to call and check. You do NOT want to expose other people
unnecessarily, nor do you want to visit a medical center with a bunch of sick people
unnecessarily!
 
Fourth – avoid travel to high-risk areas. The CDC website will keep an updated
list. https://www.cdc.gov/coronavirus/2019-ncov/travelers/index.html
 
Lastly – if you do get sick and have to be seen for treatment, make sure that your healthcare team
knows that you have 22q11 deletion and may be at risk for more severe disease. It would be very
important to notify your immunologist or ID physician that you were in the hospital, as they may
have specific recommendations for the team to try.

 

Thank you Dr. Bennett for the information. The next section is general information provided by The Center regarding precautions.

More Information
The next section described precautions typically used to reduce the risk of being exposed to
the influenza virus, modified slightly to reflect the mode of transmission of the current
corona virus that originated in China.

 

• Avoid shaking hands with people, as well as avoiding hugs and kisses. If they are insulted, just tell them why.
   

• When touching light switches, elevator buttons, doorknobs or handles, etc., especially outside of your home, don’t use your fingers or palms. If you have gloves or a nonporous material like latex, or thick paper, use them as a barrier. If you don’t have a barrier material, use your elbow or any other body part that is unlikely to come in contact with your face; if possible, push a door with your hip or back. When you fill your car, take a paper towel from the pump area to put over your hand. Even better would be disposable gloves. Be careful about touching surfaces in public restrooms. Vinyl or nitrile gloves would be a good idea. Don’t use handrails or banisters on public staircases unless you really have to do so. If you must, use disposable gloves or some type of barrier.
   

• When shopping, disinfectant wipes should be used for wiping down the handles on shopping carts, although disposable gloves would be better, as well as for handling groceries in the store that are likely to have been touched by other people.
   

• Wash your hands with soap, rubbing vigorously for at least 20 seconds and use a 90% isopropyl alcohol sanitizer whenever you return home from ANY activity where people are present or were present.
   

• If you have to cough or sneeze, do it into some type of barrier like several tissues or a paper towel and discard them immediately. Keep a good supply of tissues handy.
   

• Finally, for those who practice certain religious customs that involve touching, or kissing items during religious observance, avoid doing this. For example, for observant Jews who touch a mezuzah with their fingers and then kiss their fingers, or do the same with prayer books, or even the torah mantle, point, but do not kiss and avoid handshaking with fellow worshippers (which would be true for all religious services for all faiths). Bring your own head coverings and prayer shawls to services rather than using those put out for visitors. For Christians who take communion, many churches are making changes in the ritual to avoid exposure to the virus. In some cases, holy water fonts in Catholic churches are being removed from the entrances to the churches and cathedrals. For Muslims, many are being advised to always bring their own prayer mats for worship and the Umrah pilgrimage has been temporarily banned and Saudi Arabia has not yet said if the Hajj, which is attended by more than 60,000 people and schedule for July 28 to August 2, will be held. Check with your religious leaders, and of course, be knowledgeable about any of your local, state or national government policies.
   

If you have any questions, contact the Virtual Center for Velo-Cardio-Facial Syndrome by email at info@vcfscenter.org or by using the contact service on our web site at www.vcfscenter.com/contact.