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About COVID-19

About COVID-192020-11-18T00:38:12+00:00

COVID-19 Information for SCD Community

Objectives2020-11-19T19:16:50+00:00
  • Empower and educate patients and families on various topics including tips on managing sickle cell disease (SCD), clinical trials and research studies
  • Build awareness and increase the level of knowledge/understanding of SCD among people of all ages and backgrounds, wherever they reside
  • Determine the educational and support needs of those living with SCD, their caregivers and patient organizations
  • Connect families with SCD to the patient organizations in their localities
  • Connect patient organizations to one another
  • Reduce stigma and discrimination experienced by persons living with SCD all over the world.
Who can join?2020-11-19T19:18:37+00:00
  • People living with SCD,
  • Families, caregivers, friends and co-workers of people living with SCD
  • Patient organizations,
  • Advocates and volunteers of the SCD community.
What can be shared on the forum?2020-11-19T19:19:02+00:00
  • Strictly SCD related news, stories and updates
  • All information to be shared must be vetted by at least one of the administrators of the forum. Proposed materials must be forwarded to at least one of the administrators a minimum of 72 hours before the intended posting date. Only approved materials may be posted.
Other rules of the forum2020-11-19T19:19:29+00:00
  • No one-on-one conversations on the forum
  • Acknowledge questions/ surveys if asked. If unable to, please send a private message to the administrators
  • The forum is not a political platform, no arguments or disrespect allowed
  • Ensure that you are posting accurate information, check your sources before you share
  • Never EVER use the forum to berate someone else or air grievances. If you have an issue, address it with the relevant person outside of the forum
  • The forum cannot be used to promote personal business
  • Drugs approved by National health agencies may be promoted.
Topics2020-11-19T19:20:01+00:00
  • Once a week, administrators will post a topic for people to discuss, please ensure you participate as much as possible
  • We may also invite care providers, patients and families to address and lead some of the discussions on the forum
  • A rooster of topics will be shared ahead of each month
Consequences of non-adherence2020-11-19T20:39:43+00:00

Two warnings will be followed by removal from the forum

Tips to reduce frustration around too many notifications2020-11-19T19:20:56+00:00

If you think you are receiving too many notifications, you may hit “Mute” on the WhatsApp forum. You will still receive all the messages, but your phone will not send you a notification when there are forum updates.

Overview about Coronavirus (COVID-19)2020-10-27T03:11:56+00:00

Coronavirus (COVID-19) outbreak started in late 2019 and developed into global pandemic by March 2020.

In some countries, this virus is spreading very quickly with some people dying from it. Even though this disease is new and information about its spread and possible complications in SCD is unknown, it is crucial to avoid catching this infection or spreading it to those around you.

SCD is considered an immuno-compromised condition, which makes those living with sickle cell disease more susceptible to infections.
We hope this Coronavirus (COVID-19) pandemic comes to an end soon but at present, there is no timeline for Covid-19, therefore it is advisable to take precautions to stay healthy.

What are the symptoms of Coronavirus (COVID-19)?2020-10-27T03:12:14+00:00

People who get infected with this virus may have no symptoms at all or have very mild and barely noticeable flu like symptoms. However, some may have high fever and respiratory symptoms as cough, difficulty in breathing and sore throat. In severe cases, respiratory symptoms can worsen over a short period of time and lead to fulminant lung disease necessitating admission to the intensive care and ventilatory support. Generally, children have milder disease than adults but they can transmit the virus to older people around them. People who are more likely to have severe COVID-19 disease are the elderly and those with chronic diseases. These include individuals living with SCD and other blood disorders, chronic lung disease, kidney failure on dialysis, diabetes, hypertension, cancer and those receiving drugs that decrease their immunity or who have undergone a bone marrow or solid organ transplant.

In SCD, additional symptoms and signs not related to the respiratory system as severe pain and increasing pallor may be seen with Coronavirus infections. It is known that viral infections such as the flu can trigger vaso-occlusive crises (pain, acute chest syndrome) and lead to a sudden drop in hemoglobin in persons affected with SCD.

While there is currently no accurate scientific data to show that patients with SCD are more likely to have severe COVID-19 disease, various studies have shown that individuals with SCD typically have a weakened immune system. As such, the GASCDO encourages individuals and families with SCD to take every precautionary measure.

How is Coronavirus (COVID-19) transmitted?2020-10-27T03:12:22+00:00

COVID-19 is a highly contagious virus. People with (COVID-19) who are completely asymptomatic can still spread the virus to others and contribute to its wide dissemination. The major route of COVID-19 transmission is through droplets. But the virus can fall on surfaces, stay there for hours to days and infect those who touch these surfaces. Being in a crowded environment also makes you more susceptible to catching and transmitting this virus. COVID-19 virus is not transmitted through blood transfusion or donation.

Transmission in special situations

Pregnant women

In general, pregnant women are at increased risk for infection and serious illnesses due to physiological and immunologic changes in their bodies. Those with SCD are at higher risk of getting a wide variety of other complications as well. When infected with coronavirus, pregnancy losses can occur. But it is not certain if the same is seen with Corona COVID-19. It is also not known which complications are expected to be seen in pregnant women with SCD and Corona COVID-19 disease. Regardless, separating the mother and infant at birth to avoid transmission is recommended.

Breastfeeding

Corona COVID-19 has not been detected in breastmilk. However, mothers with COVID-19 infection are advised to express breastmilk after washing their hands thoroughly and disinfecting the pump and bottles. Healthy relatives and or assistants should feed their baby. If an infected mother decides to breastfeed, she should wear a face mask and wash her hands thoroughly and frequently with soap and water. These same precautions apply to mothers with SCD and COVID-19 infection.

How to avoid catching or spreading Corona COVID-19 virus?2020-10-27T03:12:27+00:00

PRACTICE the following:

  • Wash your hands frequently with soap and water for at least 20 seconds
  • Use 60-70% alcohol- based hand sanitizer gel if soap and water are not available
  • Cover your mouth and nose with a tissue or with your sleeve (not your hands) when you cough or sneeze, then throw used tissue immediately in a closed trash container
  • Stay away at least one meter from anyone who has respiratory symptoms
  • Clean and disinfect frequently touched surfaces
  • Clean and disinfect all food and bought items before storing
  • STAY at HOME, eat right and drink a lot of warm fluids

 

AVOID the following:

  • Avoid touching your eyes, nose, and mouth if your hands are not clean
  • Do not kiss or hug anybody and do not shake hands with others
  • Avoid close contact, sharing cups or eating utensils with others
  • Avoid taking anti- inflammatory drugs, steroids or any medication not prescribed by your doctor
  • Avoid public places or poorly ventilated buildings
  • Avoid any travel
  • Do not cut off communication with family and friend
General Advice2020-10-27T03:19:06+00:00

In case you have fever, cough, sore throat, difficulty in breathing or feel unwell with flu like symptoms or increasing pallor, do not rush to clinic, emergency department or pharmacy but call your doctor or treatment center immediately. Most likely, you will have a regular viral infection but you may have a COVID-19 infection. Remember to mention that you have sickle cell disease and that you are worried about coronavirus. Remember to share your travel history, previous contact with a confirmed COVID-19 patient and if the area you live in has COVID-19 disease. They will give you the right advice.

If you have mild disease, it is best you stay at home to avoid catching hospital acquired infections. Isolate yourself well, take all the necessary precautions and keep in close touch with your doctor/treatment center. If you have moderate to severe disease, your doctor will advise you to go to the designated unit where the decision to hospitalize you or not will be made.

If you have close contact with somebody with COVID-19 infection or have traveled to a country with COVID-19 spread or you have any respiratory symptoms, get tested without delay and stay at home until test results are out.

If you have standard health appointments and elective procedures, cancel them, to limit your exposure.

Is there any medicine that treats Coronavirus (COVID-19)?2020-10-27T03:22:04+00:00

Unfortunately, there is no treatment as yet for Corona virus COVID-19.

Because it is a viral infection, antibiotics do not help.

You need to rest, eat and drink well, take antipyretics (paracetamol), adhere to strict precautions and isolate yourself. If you have severe disease, you may benefit from ventilatory support and other medications that the intensivist will prescribe after coordinating with your doctor.

Vaccine2020-10-27T03:21:57+00:00

Keep in mind that Healthcare professionals around the world are working day and night to successfully contain COVID-19, find the right treatment and design the right vaccine for it but this may take time. Meanwhile, it is your responsibility to stay at home and take the precautions recommended by your doctor to stay safe and keep those around you safe.

info-1

Here are some reputable websites with regular updates

GASCDO is here
to help you.

The global sickle cell community is a priority to GASCDO.

Feel free to get in touch with us at contact@scdglobal.org

if you have any comments or questions.

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