COVID -19

COVID-19 & BTG Resources

Welcome to Bridge the Gap – SYNGAP Education and Research Foundation’s COVID-19 Resource Page for people with SYNGAP1, their families and caregivers.   We have recently received an influx of questions from the SYNGAP1 Community related to COVID-19.  We have created this webpage to help share COVID-19 related community resource information in a timely manner.  We hope you find the information and resources listed helpful. 

Please note –

“The following COVID-19 Resource Listing and FAQ’s on Bridge the Gap – SYNGAP Education and Research Foundation’s website, are not a substitute for medical advice from your healthcare provider.  The information provided is not intended to diagnose, treat and/or recommend a specific course of medical intervention.  Always follow the medical advice provided to you by your healthcare professional.  If you think you may have a medical emergency, immediately call your doctor or dial 911.”

Coronavirus Disease 2019 (COVID-19)

Bridge the Gap – SYNGAP ERF has prepared the following webpage to help address questions and concerns we have been receiving from SYNGAP1 Community Members regarding COVID-19.  For more comprehensive COVID-19 public health information and guidance, please refer to the Centers for Disease Control_COVID-19 (CDC) webpage(s).

 

Frequently Reported COVID-19 Symptoms

  • Cough
  • Fever
  • Shortness of breath
  • Diarrhea

*Please note this list is not inclusive of all possible COVID-19 symptoms.  If you think you or a loved one may have contracted COVID-19, contact your healthcare provider for guidance.

COVID-19 Mode of Transmission and Illness Risks

      1.  Can I get sick by touching a surface or object that has the virus on it?

  •  According to the CDC, coronavirus are generally thought to be spread from person-to-person through inhalation of respiratory droplets produces when an infected person coughs or sneezes.
  • It may be possible to become ill by touching a surface or object that has the virus on it and then touching their own mouth, nose, or eyes. Wash your hands often and try not to touch your face unless you have just washed your hands.

      2. Who is at higher risk for serious illness from COVID-19?

  • Older Adults
  • People with a serious chronic medical condition such as:
  • Diabetes
  • Heart Disease
  • Lung Disease (e.g. COPD)
  • Hypertension
  • Individuals on immunosuppressant’s (see below)

3. What should people at higher risk of serious illness from COVID-19 do?

  • The CDC recommends contacting your healthcare provider to ask about obtaining extra necessary medication** and supplies in case of an outbreak of COVID-19 in your local community, which may require you to stay home for a prolonged period. You may want to consider a mail-order vendor if you cannot obtain extra medication.
  • Keep away from others who are sick.
  • Avoid Crowds.
  • Wash hands often.
  • If an outbreak occurs in your community (e.g. workplace, school, church), stay home as much as possible and follow any specific recommendations made by local authorities.

**FDA DRUG SHORTAGES: Bridge the Gap – SYNGAP Education and Research Foundation is not aware of any current seizure medication shortages caused by COVJD-19. Refer to the FDA Drug Shortage website for current information.

     4. Should I wear a facemask to prevent contracting COVID-19?

  • If you are sick wear a cloth covering over your nose and mouth
  • You should wear a cloth face covering, over your nose and mouth if you must be around other people even at home).

Note: During the COVID-19 pandemic, medical-grade facemasks are reserved for healthcare workers and some first responders. You may need to improvise a cloth face-covering using a scarf or bandana.

 5.  Is it safe for me or my loved one to go to work or school?

  • On April 3, 2020, the White House announced a program called “30 Days to Slow the Spread,” which is a nationwide effort to slow the spread of COVID-19 through the implementation of social distancing at all levels of society.
    • If COVID-19 is spreading in your community, the CDC recommends “social distancing” or taking extra measures to put distance between yourself and other This may include staying home as much as possible and avoiding crowds, especially in poorly ventilated places.
    • If you must go out in public it is recommended to stand 6 feet apart from other individuals.
    • Contact your local school’s administration or your employer to see what steps they may be taking to keep students and/or staff For reference, see the CDC’s school and childcare guidance

     6.  Is it safe for me or my loved one to travel?

  • Based on the CDC’s guidelines for preparing for and preventing COVID-19, individuals with high risk factors should consider rescheduling planned trips to areas affected by COVID-19, particularly those with level 2 travel
  • Avoid non-essential travel to destinations with level 3 travel notices because of the risk of contracting COVID-19.
  • Please refer to the CDC and Johns Hopkins maps for the latest information on affected areas.

 7.   Is it safe for me or my loved one to continue going to clinic appointments?

  • We recommend maintaining regular clinical care. If you have questions or concerns about an upcoming clinic appointment or if you are in an area affected by COVID-19, we recommend contacting your TSC Clinic for further
  • Please refer to the CDC and Johns Hopkins maps for the latest information on affected areas.

  8.  Will our children have the same accessibility as others to needed treatment if the system becomes overloaded?

  • We recommend maintaining calling your clinic to ask if they will have telemedicine available for non-emergency appointments. If it is an emergency, call 911 immediately.
  • Please refer to the CDC and Johns Hopkins maps for the latest information on affected areas.

  9.  What type of GI symptoms should we look for if infected with COVID-19?

  •  GI symptoms are not uncommon with COVID, diarrhea can be a symptom.
  • Some patients also have nausea but without vomiting.
  • If families and patients have masks in their possession, it may be prudent to wear them and of course hand washing (20 sec) with soap is most important at this time.
  • See this recent pre-proof publication from American Journal of Gastroenterology.

Please note:  Due to the evolving nature of the COVID-19 pandemic, the information provided on this website is subject to change.  We will post updates on a regular basis.  However, please utilize the CDC website, your local health department and your healthcare provider for the most up to date public health information and recommendations.

RESOURCES AND REFERENCES – Click on the following links for additional resource information.

ADDITIONAL RESOURCES & COVID-19 NEWS: 

Week of April 6, 2020:

Week of March 30, 2020:

Week of March 23, 2020:

  • Health and Human Services Secretary Azar sent a letter to Governors asking for their assistance in extending the capacity of the health care workforce to address the COVID-19 pandemic. The letter specifically calls out the scope of practice issues, asking Governors to “Relax scope of practice requirements for health care professionals, including allowing professionals to practice in all settings of care.”
  • The National Institute of Environmental Health Sciences (NIEHS) released health and safety resources on their website for workers who may be at risk of exposure to COVID-19. Resources can be found here.
  • Medicaid approved seven more state waivers to address the consequences of COVID-19. A list of state waivers can be found here.
  • The American Medical Association released coding guidance to assist providers during the COVID-19 emergency.
  • The American Academy of Neurology has created a COVID-19 resource center.

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