A Conversation About Sickle Cell Disease: A Patient and Service Provider Perspective

May 11, 2021

SCAGO logo

The Sickle Cell Awareness Group of Ontario (SCAGO) is the 21st charity to join Federated Health.  Despite approximately 4000 people in Ontario are living with Sickle Cell Disease (SCD), there is a lack of knowledge about what the disease is and what it is like to live with it. 

According to the SCAGO website, Sickle Cell Disease “is a group of red blood cell disorders you have inherited and are born with. SCD is caused by an abnormal form of Hemoglobin. This is the part of your red blood cell that carries oxygen around the body and keeps your vital organs working. In SCD, the abnormal Hemoglobin (HbS) is not able to work properly. The red blood cells become stiff and block up the blood vessels in your body, causing pain and damage, and they also get destroyed quickly, leading to anemia and other complications. Currently, there is no universal cure for SCD” (https://sicklecellanemia.ca/abc-of-scd, 2021).

We had the chance to have a conversation with Chavakaye’Cameisha Hemmings, who is living with SCD, and Lanre Tunji-Ajayi, the President/CEO of SCAGO, to gain insight in to the realities of living with SCD, the needs of the SCD community, and the work that SCAGO is doing to support people living with this disease.  Below you will find excerpts from our conversations.

Federated Health Charities (FHC): Tell me about your experience living with sickle cell disease?

Chavakaye’Cameisha Hemmings (CCH): As a child I was not able to participate in a lot of the same activities as my peers as I would tire quite easily.  I remember my mom enrolling me in swimming, which I loved, and after a few weeks I realized that after every class I felt like I had no energy. I loved basketball but did not have the stamina to keep up with the others on the team. I loved travelling but would have major back pain sitting on flights over three hours long.

When I was young, I suffered a stroke which caused my brain to process things differently from others and focusing became an issue for me. On top of that, I have been diagnosed with Avascular Necrosis, which in simple terms means bone death due to lack of blood and oxygen, which results in me having to be extra careful with how I move my body so as not to injure myself.

FHC: How has this disease impacted your loved ones?

CCH: SCD ran in my family so my mom knew all too well the pain and discomfort that came with it and was very protective, cautious, and afraid, as a result.  She was always afraid I was going to have a sickle cell crisis when I reported that any parts of my body hurt and was always advocating for me at the doctors or school.

FHC: Tell me about the barriers facing the SCD community?

Lanre-Tunji-Ajayi (LTA): SCD is a lifelong chronic disease predominantly affecting people of Black ancestry though many from the Mediterranean, Middle East, South Asia and South America are also affected. Over the years, the Sickle Cell Disease patients continue to be under-treated and under-served when seeking care in Ontario hospitals; stigmatized as drug seeking and turned away often, experiencing (un)conscious biases at various levels of the health care systems

Unfortunately, due to the complications and discrimination associated with the disease, the life span of individuals with Sickle Cell Disease is reduced by about 25-30 years, compared to their peers.

FHC: What is something you wish people better understood about SCD?

CCH: I wish that people were more aware of the disease and understood that if a person with SCD says they are in pain or don’t have the energy to do something, then that is the truth, and they aren’t to be labelled as lazy or lying.   I wish people, especially in the medical community, understood the severity of pain we experience when we are in crisis and didn’t turn us away based on negative stereotypes.  We just want to be seen, heard and have our pain taken seriously.

FHC: How would donations given to the Sickle Cell Awareness Group of Ontario help the SCD community?

LTA: The funding would be used to support programs geared towards improving the quality of life of individuals with SCD and their families. 

FHC: How has SCAGO helped you?

CCH: SCAGO has been very helpful in my life.  After joining this group, I was able to connect with people who know what I’m going through and understand exactly what a crisis means. Being a part of SCAGO fosters a shared connectedness with others and a sense that you are not alone. 

FHC: What sort of funding or support does the sickle cell disease community receive compared to other illness groups?

LTA: Except for the Federated Health Charities recent support, SCD, unlike other disease groups, does not have any tangible source of sustainable funding.

FHC: If you could say one thing to someone considering a donation to SCAGO, what would it be?

CCH: SCAGO is a group that works towards improving the lives of people living with SCD across the province.  Every donation counts and is very much appreciated.

LTA:  Since its establishment, SCAGO invests 100% of its resources in improving the quality of life of individuals and families affected by SCD.  We rely on the generous support of donors, and partners in our mission to improve the lives of Ontarians living with SCD, and ultimately to find a cure for this devastating disease. Your donation will take us further in our mission.

FHC: If you could say something to those who have already donated to SCAGO, what would it be?

LTA: We are grateful to you for your donation and we assure you that it has made a difference in the lives of SCD patients and families in Ontario.  We also know that you are aware of the ongoing needs of the sickle cell disease community in Ontario. As such, we hope you will consider to be a lifetime donor and we thank you in advance for this level of support! Thank you. We invite you to support the incredible work of the Sickle Cell Awareness Group and consider making a donation today.

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