Running two businesses while having sickle cell disease (SCD) may be a lot for many people but Fitz-Ann faced the challenge head-on and is also looking forward to going back to school to become a registered massage therapist.
Her determination and resilience stemmed from the strength provided by dealing with SCD.
In this booklet:
How were the vaccines developed so quickly?
The development of mRNA vaccines can be traced back as far as the 1970s but had not yet been tested in real-world conditions when the COVID-19 pandemic began.
Due to medical urgency, manufacturers of these vaccines were provided additional government funding to begin mass production, and emergency authorization to begin using them, even before clinical trials had been completed. These trials have now demonstrated that these vaccines are extremely safe and effective, and Health Canada granted full approval in December 2020.
Will my DNA be altered by the vaccine?
There is absolutely NO evidence to suggest that vaccines will change or alter human DNA in any way. Instead, the COVID-19 vaccine tells your immune system to create antibodies. These antibodies fight the COVID-19 virus.
Is the COVID-19 vaccine safe for people with sickle cell disease?
While the precise number of individuals with sickle cell disease who have been vaccinated against COVID-19 is unknown, available data suggest it numbers in the tens of thousands. Even with this high degree of uptake, reports of serious adverse effects of COVID-19 vaccination in sickle cell patients are vanishingly small. Vaccination against COVID-19, particularly with the vaccines available in Canada, can therefore be considered extremely safe in patients with sickle cell disease.
Does the vaccine cause blood clots?
There are no increased risks of blood clots from the vaccine. People with sickle cell disease often have issues with blood clots. According to Jo Jerrome, chief executive of Thrombosis UK, “Having a previous thrombosis or thrombophilia (sticky blood) is not a risk factor for developing the rare post-Covid-19 vaccine thrombosis and thrombocytopenia.”
The risks of contracting the COVID-19 virus still heavily outweigh the risks of any vaccine side effects.
Is it safe to take the vaccine while taking hydroxyurea?
YES! Hydroxyurea will not interfere with the vaccine response. You can continue taking all of your other sickle cell disease medications (like hydroxyurea) as you usually do.
In one study, for example, all patients with sickle cell disease developed high antibody levels against COVID-19 after receiving 2 doses of the vaccine, despite the fact that 80% of them were taking hydroxyurea at the time.
Do I still need the vaccine if I have contracted COVID-19?
YES. While being infected with COVID-19 can lead to the development of antibodies that protect against re-infection, this response is highly variable: in some individuals, these antibodies occur only at low levels and don’t last. Since vaccination leads to a more consistent and long-lasting response, it is still recommended even for individuals who have previously been infected.
Will the vaccine cause fertility issues?
NO. There is NO evidence to suggest that the vaccine causes fertility issues. In one study of 2000 couples trying to get pregnant, for example, vaccination status did not affect the chances of a successful pregnancy. The same study did find that pregnancy was delayed if the male partner had actually had a recent COVID-19 infection however, other studies have shown harmful effects to both mother and fetus if a woman becomes infected with COVID-19 during her pregnancy. Note: Some women do notice changes in their monthly cycle due to the body’s immune response to the vaccine. This is temporary.
Can I get the vaccine if I am pregnant?
Yes. Other vaccines like the flu shot and Tdap (tetanus, diphtheria, pertussis) are usually recommended during pregnancy. The CDC recommends scheduling the COVID-19 vaccine at least 14 days before or 14 days after other vaccinations. However, every pregnancy is different. If you are pregnant and curious about the COVID-19 vaccine, it is vital to talk to your health provider to determine if receiving the vaccine is right for you, and the best timing to do so.
mRNA vaccines: how do they work?
Two of the vaccines approved for use in Canada are messenger RNA vaccines (called mRNA vaccines): Pfizer and Moderna. The vaccine teaches your cells how to make a protein that will trigger an immune response.
Once triggered, your body makes antibodies. The antibodies fight the infection if you contract the virus.
Government of Canada, Canadian Institutes of Health Research. “The Long Road to MRNA Vaccines - CIHR.” Cihr-Irsc.gc.ca, 28 Apr. 2021, cihr-irsc.gc.ca/e/52424.html.
“How Close Are We to a COVID-19 Vaccine? What Pfizer’s Early Results Mean for Canadians | CBC News.” CBC, www.cbc.ca/news/health/covid-19-vaccine-pfizer-faq-1.5795486.
“Latest Data on COVID-19 Vaccinations by Race/Ethnicity | KFF.” Web.archive.org, 9 July 2021, web.archive.org/web/20210709203754/https:/www.kff.org/coronavirus-covid-19/issue-brief/latest-data-on-covid-19-vaccinations-race-ethnicity/. Accessed 25 Mar. 2022.
Varelas, Christos, et al. “Immune Response of Adult Sickle Cell Disease Patients after COVID-19 Vaccination: The Experience of a Greek Center.” Journal of Clinical Medicine, vol. 11, no. 4, 11 Feb. 2022, p. 937, 10.3390/jcm11040937. Accessed 24 Feb. 2022.
CDC. “Coronavirus Disease 2019 (COVID-19).” Centers for Disease Control and Prevention, 11 Feb. 2020, www.cdc.gov/coronavirus/2019-ncov/science/science-briefs/vaccine-induced-immunity.html.
“Study Suggests COVID-19 Vaccines Do Not Reduce Fertility.” National Institutes of Health (NIH), 7 Feb. 2022, www.nih.gov/news-events/nih-research-matters/study-suggests-covid-19-vaccines-do-not-reduce-fertility.
Accessed 25 Mar. 2022.
“Covid Vaccines and Blood Clots: Your Questions Answered.” BBC News, 19 Apr. 2021, www.bbc.com/news/uk-wales-56764182.
“Pregnancy, Breastfeeding, Fertility and the COVID-19 Vaccine - Sunnybrook Hospital.” Sunnybrook.ca, sunnybrook.ca/content/?page=pregnancy-breastfeeding-fertility-covid-19-vaccine.
Need COVID-19 Counselling?
SCAGO is here to support your counselling and information needs around COVID-19 vaccination, including vaccine safety, as well as general mental health and well-being. Our team includes a clinical counsellor, social worker and Covid-19 ambassadors eager to provide you with high-quality confidential one-to-one counselling and connection with information resources to support wellness.
To reach our Team, please contact SCAGO by phone at 647-477-4260 or email: counselling@sicklecellanemia.ca
You may also complete the counselling form here
We look forward to hearing from you and supporting your well-being journey.
Our Team:
COVID-19 Ambassadors:
Sammah
Abigail
Christine
Social worker
Thea Campbell
Counselling Associate:
Sandra N., PhD.
Toronto, ON − April 10, 2022 − The Sickle Cell Awareness Group of Ontario (SCAGO) has been granted funding from TD Bank Group (TD) for the project “Improving Health Outcomes and Reducing Preventable Complications in the Sickle Cell Disease Community.”
SCAGO will receive $30,000 for the project over a two-year period as a part of funding provided by TD through the TD Ready Commitment, the Bank's corporate citizenship platform.
SCAGO supports and advocates for Ontarians living with sickle cell disease, a debilitating and life-shortening blood disorder that primarily affects people of African descent. There are approximately 6000 Canadians living with sickle cell disease, 3500 of which live in Ontario, and many face numerous barriers to quality care. Through this initiative, the underserved and marginalized SCD community will have improved access to disease-management health education, and psycho-social programs.
Quotes:
“Health equity ensures all people attain their optimal health outcomes. Accessing this funding from TD will allow the Sickle Cell Awareness Group of Ontario to improve the health outcomes of Canadians living with sickle cell disease and we are grateful to TD for extending support to the marginalized SCD community,” said Mrs. Lanre Tunji-Ajayi, SCAGO’s President and CEO.
"We know that many people, including those living with sickle cell disease, face barriers to accessing essential health programs and services when they need them most," said Amy Hanen, Associate Vice President, Social Impact – Canada. "Disease management education, virtual medical appointments and peer support programs can help reduce the severity and burden of the disease. That's why, through the TD Ready Commitment, we are supporting innovative solutions that improve access to care and help create more equitable health outcomes for everyone."
About the Sickle Cell Awareness Group of Ontario (SCAGO)
The Sickle Cell Awareness Group of Ontario (SCAGO) is a leading charitable patient organization providing evidence-based support to families with children, adolescents, and adults, with sickle cell disease across the four regions of the province of Ontario. It supports clinical research, engages in psycho-social research, health promotion, patients and care providers’ education, community awareness, and development of best practices and guidelines. Since its establishment, SCAGO has invested 100% of its resources in improving the quality of life of individuals and families affected by sickle cell disease. It engages in evidentiary advocacy on their behalf with the government, schools, and the health care system.
Media Contact: media@sicklecellanemia.ca
Are you between 12 to 18 years of age with Sickle Cell Disease?
Consider participating in the iPeer2Peer study.
What is the study about?
Researchers are testing a new online mentoring program to offer social support and self-management advice to adolescents with Sickle Cell Disease or Sickle Cell Anemia. The program is part of an ongoing research study led by The Hospital for Sick Children in Toronto.
What’s involved?
How can I participate in this study?
If you would like more information about this study, please contact (Brittany Wiles, Research Coordinator at brittany.wiles@sickkids.ca, or by telephone at (416) 813-7654 ext. 309133), or contact your haematologist at one of the participating hospitals listed below:
In this session, Dr. Deji Ayonrinde and Dr. Bola Ola discussed the current state of mental illness in the sickle cell community and ways to increase awareness and attention around the mental wellbeing of those diagnosed with sickle cell.
My name is Fitz-Ann Howell and at the young age of 5 months, I was diagnosed with sickle cell disease. The years leading up to my 28th year of life with this disease have been a whirlwind, to say the least. I can truly say that I have been impacted both negatively and positively.
It is expected that yes, the pain and stress of this disorder are a lot to handle and are definitely the worst side of the disease. Although this disease has given me so much negativity, it has also given me lifelong friendships with people who understand what I go through, opportunities that I would not have received otherwise, and inner strength that I didn’t know that I had.
One thing that I would like others to understand is sickle cell isn’t a death sentence and shouldn’t be seen as such because people are living full lives with this disease every day. With the help of SCAGO, I have been given opportunities such as becoming a member of the Patient Advisory and Advocacy Council (PAAC) and I have even been a speaker in various events advocating for warriors such as myself. They have also helped me in receiving bursaries to aid in me pursuing my career.
The Sickle Cell Awareness Group of Ontario (SCAGO) célébrera le Mois de l'histoire des Noirs avec une collecte de sang d'un mois pour soutenir les personnes vivant avec l’anémie falciforme en Ontario. Faites un don ce mois-ci en tant que membre de l'équipe SCAGO et courrez la chance de gagner une carte-cadeau Visa!
De nombreuses personnes vivant avec l’anémie falciforme nécessitent des transfusions sanguines continues, et les personnes bénéficiant de cette option de traitement doivent recevoir du sang de leur communauté pour réduire les risques de développer des anticorps. En donnant du sang, vous soutenez l'un des traitements les plus importants contre l’anémie falciforme.
Pour faire un don, vous devez avoir au moins 17 ans et être en bonne santé générale. Vous pouvez faire un don si vous êtes porteur du trait de l’anémie falciforme. Vous ne pouvez pas donner de sang si vous êtes atteint de l’anémie falciforme. Apprenez-en davantage sur les exigences et le processus de don sur le site Web de la Société canadienne du sang ici.
Pour participer, il vous suffit de vous inscrire à l'équipe Partenaires pour la vie de SCAGO sur le site Web ou l'application de la Société canadienne du sang et de prendre rendez-vous. Vous serez automatiquement inscrit pour courir la chance de gagner l'une des 15 cartes-cadeaux Visa (valeur de 25 $). Notez que vous devez accepter de partager votre nom et votre courriel avec l'équipe des champions de SCAGO afin d'être inclus dans le tirage.
Aime et partage
Pour une inscription supplémentaire au concours, aimez et partagez notre publication sur Facebook (@scagoscd) ou Instagram (@scago.1) et identifiez-nous. L’inscription supplémentaire n'est valide que si vous êtes déjà inscrit auprès de l'équipe SCAGO de la Société canadienne du sang et que vous avez un rendez-vous pour faire un don.
Envoyez-nous une photo
Envoyez-nous une photo de vous en train de faire un don à media@sicklecellanemia.ca pour une inscription supplémentaire au concours. Vous devez porter un masque et respecter la distanciation sociale sur la photo. Une inscription supplémentaire n'est valide que si vous êtes déjà inscrit auprès de l'équipe SCAGO de la Société canadienne du sang et que vous avez un rendez-vous pour faire un don.
The Sickle Cell Awareness Group of Ontario (SCAGO) will celebrate Black History Month with a month-long blood drive supporting people living with sickle cell disease in Ontario. Donate this month as a member of team SCAGO and you could win a Visa Gift Card!
Many individuals living with sickle cell disease require continuous blood transfusions, and individuals on this treatment option must receive blood from their community to reduce the chances of developing antibodies. By donating blood, you are supporting one of the most important sickle cell disease treatments available.
To donate you must be at least 17 years old and in good general health. You are able to donate if you have sickle cell trait. You are not able to donate blood if you have sickle cell disease. Learn more about the requirements and process for donation on the Canadian Blood Services website here.
To enter, simply sign up for SCAGO's Partner for Life team on the Canadian Blood Services website or app and book an appointment. You will automatically be entered for the chance to win one of 15 Visa Gift Cards ($25 value). Note that you must agree to share your name and email with SCAGO's team champion in order to be included in the draw.
Like and Share
For an additional entry to the contest, like and share our post on Facebook (@scagoscd) or Instagram (@scago.1) and tag us. Additional entry is only valid if you are already signed up with team SCAGO on Canadian Blood Services and have an appointment booked to donate.
Send us a Photo
Send us a picture of you donating at media@sicklecellanemia.ca for an additional entry to the giveaway. You must be wearing a mask and be socially distanced in the photo. Additional entry is only valid if you are already signed up with team SCAGO on Canadian Blood Services and have an appointment booked to donate.
Toronto, ON − January 25, 2022 − The Sickle Cell Awareness Group of Ontario (SCAGO) will receive funding from the Public Health Agency of Canada, through the Immunization Partnership Fund (IPF), for the project “Improving Vaccination Acceptance within the Sickle Cell Disease/Black Community.”
SCAGO will receive up to $200,000 in federal funding for the project over a two-year period, to augment its COVID-19 vaccination initiatives for the sickle cell disease/Black community in Ontario.
SCAGO supports and advocates for Ontarians living with sickle cell disease, a painful and life-shortening blood disorder for which there is no universal cure, and that predominantly affects people of African descent. The IPF funds awarded will move the organisation closer to ensuring that families with sickle cell disease and the larger Black community have equitable access to COVID-19 facts and vaccination.
“Health equity in Ontario will be achieved when every Ontario citizen with sickle cell disease is provided with an equal chance at attaining their fullest health potential,” said Mrs. Lanre Tunji-Ajayi, SCAGO’s President and CEO. “This funding from the Public Health Agency of Canada will bring Ontario’s sickle cell disease/Black community closer to achieving a more equitable COVID-19 vaccination uptake and we are grateful for this opportunity.”
Despite being one of the groups that have been most affected by the pandemic, COVID-19 vaccination rates amongst Black Canadians have lagged in comparison to the national average. The IPF helps to reduce barriers to vaccination in communities with lower vaccine uptake. Access to vaccines is of particular importance to vulnerable groups with conditions like sickle cell disease.
Quotes:
"I am so pleased that the Sickle Cell Awareness Group of Ontario will benefit from the COVID-19 Immunization Partnership Fund. This will go a long way in helping to fill the gaps for vulnerable Canadians suffering from sickle cell disease. This funding commitment is confirmation that the federal government is listening and recognizes the special circumstances in dealing with vaccines, by those already managing challenges to their health," said Senator Jane Cordy.
“I am proud to congratulate the Sickle Cell Awareness Group of Ontario as one of the approved groups to receive funding from the Public Health Agency of Canada. Under the Immunization Partnership Fund, SCAGO will be aided in developing tools, training, and information for healthcare providers to counsel individuals on the importance of COVID-19 vaccines and other vaccines, as well as support community-based COVID-19 education, promotion, and outreach, said The Hon. Judy A. Sgro, P.C., M.P. “I am extremely proud of our current Liberal Government for stepping up in the fight against COVID-19 and actively working to ensure Canada recovers from the pandemic as strongly as possible. I would like to congratulate the Sickle Cell Awareness Group of Ontario for all the hard work and effort they have demonstrated over their many years, and look forward to seeing the opportunities this funding will allow the organization.”
“I have been friends with Lanre, the President/ CEO of SCAGO, since 2018 and she has been a tremendous advocate for people with sickle cell and thalassemia,” said MPP Andrea Khanjin. “She was a driving force behind Bill 255, the Sickle Cell Disease Awareness Day and Thalassemia Awareness Day Act, and continues to push for more support for her community. I am thrilled that SCAGO has been approved by the federal government for funds for their COVID-19 immunization partnership, which will bring vaccines to people that are extremely vulnerable to this virus.”
“Recognizing that Ontarians living with sickle cell disease are particularly vulnerable to COVID-19, the Province has prioritised vaccines for those at the greatest risk of severe illness, and for those who care for them,” said Rudy Cuzzetto, MPP for Mississauga-Lakeshore. “I want to thank SCAGO President Lanre Tunji-Ajayi for all her efforts to further address and reduce barriers to vaccine access and acceptance within the sickle cell disease community in Ontario. I’m confident that this federal grant, through the Immunization Partnership Fund, will help her, and other community leaders, in these very important efforts.”
“The leadership of the African-Canadian Social Development Council is excited about the funding awarded to SCAGO by the Public Health Agency of Canada. This project will be of tremendous benefit to our whole community and the Council is happy to be part of its execution,” said Kabu Asante, President of the African Canadian Social Development Council.
Quick Facts:
About the Sickle Cell Awareness Group of Ontario (SCAGO)
The Sickle Cell Awareness Group of Ontario (SCAGO) is a leading charitable patient organization providing evidence-based support to families with children, adolescents, and adults, with sickle cell disease across the four regions of the province of Ontario. It supports clinical research, engages in psycho-social research, health promotion, patients and care providers’ education, community awareness, and development of best practices and guidelines. Since its establishment, SCAGO has invested 100% of its resources in improving the quality of life of individuals and families affected by sickle cell disease. It engages in evidentiary advocacy on their behalf with the government, schools, and the health care system.
Media Contact
Karla Watson
media@sicklecellanemia.ca
