COVID-19 and CdLS
Hello everyone – writing to you amidst the coronavirus pandemic of 2020, with all families in voluntary stay-at-home or quarantine.
I certainly hope you and your loved one with CdLS are doing well. Many families whose children/adults live separately have not been able to get together with that child/adult in person for many months or have only been able to have a reunion recently. We were all sad not to have our national meeting in person this year.
COVID-19, or coronavirus disease 2019, is from a new type of coronavirus (called SARS-CoV-2), circulating the world since last year. Dr. Jyonouchi and I addressed concerns earlier this year on a live webinar. Although there have been many severe cases, there have been more instances in which people have had few or no symptoms. Studies have shown that children are less severely affected than adults and are more likely to have no symptoms, however, infants below 12 months can be more involved than older children.
Because CdLS does not typically cause immune compromise, or serious lung/respiratory involvement, there should be no increased risk for children/adults with CdLS to get COVID-19. We have heard of only a few individuals with CdLS who have been affected with COVID-19, some needed hospitalization, but most have done well. Medically, the most important measure is to wear a mask; this protects not only yourself but others in case you are affected without symptoms. If symptoms develop, contact your doctor. Testing is important to confirm an infection and for the health of the public. Self-isolate, keep hydrated and in touch with your doctor. Numbers have spiked in recent weeks and there may be a second wave, so continue to wear a mask, maintain six feet distance from others and wash your hands well.
Children with CdLS during this isolation period still need to have access to school, as well as continued involvement in early intervention therapy. Even if therapy occurs online, it should be ongoing or resume with school. Some adults with CdLS may have gone back to work as an essential worker, putting themselves and their families at risk for exposure to COVID-19. They need to be able to have appropriate transportation and support. It is of utmost importance that they wear well-fitting masks, wash their hands frequently and be encouraged not to get too close to others or touch their face. We applaud their bravery and appreciate their dedication.
Separation from loved ones is one of the greatest secondary casualties of this pandemic. Anyone with any inability to understand everything fully will not understand this separation, especially the length of time needed to be apart. It is difficult not to have contact in person, not only for the individual with CdLS, but also for you as parents/caregivers. Facetime cannot substitute for touching, hugging, or hearing the voice in person, but are still very important. Please try to bear with it, have a hopeful attitude, maintain good mental health, and know that at some point we should be able to return to our former regular lives (although possibly with masks). Stay healthy and please take care of yourselves and your children with CdLS. We miss them too!
REACHING OUT, fall 2020, published on 1 nov. 2020
