Ask the Advocates: The World’s View of Sickle Cell
Sickle cell disease (SCD) is viewed and treated differently all around the world. Where you are born can determine whether you or your children are screened at birth. It can dictate whether you have access to treatments or curative therapies. It also might affect how you are seen through the eyes of your community.
We are fortunate here at Sickle-Cell.com to have patient leaders from all parts of the globe. We asked them to give us insight into how their countries of origin shaped their lives.
How is sickle cell viewed in the country you grew up in?
Newborn screening isn’t a thing, so no one really knows that they or their loved one/child has sickle cell until they start having symptoms. For most people, this is around 6 months of age. But sometimes it still goes unnoticed, which leads to a lack of treatment, so it has a bad reputation for being lethal.
Still, in my community, it wasn’t talked about. Even when someone in the family or close to the family was known to have the disease, no one else wondered if they did, too. Or even if they had the trait. That’s how I got sickle cell without anyone knowing until my first – known – crisis at 7 years of age. That’s also when we found out both of my parents have sickle cell trait.
Sickle cell in Suriname is a disease where there are still a lot of unknown areas and a lot of stigmas. People still think that you will die young when you have SCD. We don’t have all the different treatment opportunities like the ones we have in the USA. It’s a huge difference. What we also see is that a lot of adults are losing their jobs due to SCD. There is a lot of discrimination, and that is so wrong.
Sickle cell is viewed as a taboo. It’s surprising to be that way because we have the highest rate of people living with sickle cell. So you’d assume that there should be less stigma around sickle cell, but no. There’s so much stigma that comes with living with sickle cell here, and I guess this is because too many people have been misinformed. Some don’t even know what it is.
Lena (United States)
I came into the world about two decades prior to a lifesaving treatment being created that would give me life anew. In the USA, sickle cell has been unseen and widely ignored. In America, every square mile has been steeped in twin sins, unbridled capitalism, and unabashed hatred.
Our medical system is set up to profit the doctors and insurance companies, while the patients are left bankrupt whether they’ve been properly cared for or not. Compounded with the red stink of generationally practiced racism towards those of color, now you have an absolutely uninhabitable atmosphere where sickle cell patients disappear into the wallpaper.
Healthcare education utilizes a dog whistle loophole by designating it a “rare disease” based on the number of Americans it affects. However, SCD numbers have not been properly collected, especially across genotypes. Essentially, it’s an executive excuse to ignore one of the most brutally disastrous genetic mutations ever to affect the human body.
Nigeria has the highest burden of SCD in the world, but there is still poor utilization of standard-of-care practices for patients. Many physicians deem themselves a jack of all trades and see chronically ill patients as profitable cash cows.
When patient care is not a number 1 priority, this can sometimes lead to a medical malpractice case if the symptoms presented by the patient are wrongfully diagnosed. The care available for SCD patients is subpar, and there is an urgent need for coordinated government efforts to tackle these problems. But to make a significant impact on the burden of the disease, it would require more focus on the primary care level.
Well, while I would say things are getting better as more awareness about sickle cell is made and warriors are getting bolder to talk about their condition, in the past, this was not so. In the past, sickle cell was associated with witchcraft, worms, and curses. It was believed that crises were a result of worms moving around in the body of a warrior as a result of a curse placed on him/her.
Even now, there are still people who believe this and would not go near a sickle cell patient. Most warriors are treated as outcasts in their own homes and villages as a result of this belief.
Have you encountered stigma, myths, or misconceptions about your disease?
Yes, many times. When I was in secondary school, I was known to have sickle cell. So whenever it was time for activities, the teachers always told me not to participate. No one gave me the chance to even try. It was always “Oh, he can’t do it. He shouldn’t.”
I heard a misconception one time, and it was from a doctor. I met this doctor at a clinic, and she asked to see the scars on my hip after I told her that I had avascular necrosis. At first I thought I should ignore, but I couldn’t, so I told her that avascular necrosis doesn’t have scars. But she didn’t listen; instead, she argued with me. Imagine what other wrong things this doctor believed about sickle cell and would spread to her patients and the public.
I have encountered so many myths and misconceptions about my disease since I was a child. The stigma that comes with it is just too much for me to bear. People would not even sit close to me. There were times my illness was assumed to be HIV/AIDS because of how skinny I was. Kids would not play with me or even come close to me because their parents either told them I had AIDS or that I was a witch and cursed.
Even to date, the stigma is so bad that it affects my ability to get a job. I have few friends and am still single because of my illness. I’ve just learned to accept it and live with it with time. Very few want to date or marry a sickle cell patient, especially if he/she is SS.
Yes, so many. I’ll never forget when I was in my college anthropology lecture at a top university in the country and the professor blatantly said everyone with sickle cell dies. I remember sitting in my seat in sheer shock at the statement and talking to him after class. I told him I had sickle cell, and he tried to act as if somehow I was confused and obviously had sickle cell trait. I corrected him again, and that was the end of that.
I find a lot of people view sickle cell as lethal, and if not that they simply don’t understand what it is at all. I’ve had times where I’ve told someone I have sickle cell only for them to forget. And times where I don’t tell people and then get sick and they get mad at me for not telling them – as if I was inconveniencing them with my pain.
How did your country's view of sickle cell shape who you are today?
The health-related stigmatization made me ashamed to own my disease. For many years, I struggled with self-acceptance, which seemingly took a toll on my mental health. I've withheld disclosing my health diagnosis on job applications, in romantic relationships, and among family members in fear of mistreatment.
I was born from tough genes, notwithstanding the mutation. I am a descendant of those who survived generations of kidnapping, enslavement, psychological terror, and physical brutalization. I am the fruit of those who grew from concrete. Because of them, I never gave up hope. Because of my ancestors, I persevered until I found my pathway to healing.
The more resistance I met in this ill-fitting society, the more determination I mustered. I’ve gone my whole life being undervalued, unseen, overlooked, and unconsidered. Now, as an adult who had enough patience to seek proper care for an illness I did not bring on myself, I live intentionally and expect proper treatment and care no matter where I step. I command respect, repel negativity, and rebuke any harm aimed in my direction.
What message would you like to give to those living with sickle cell around the world?
I would say that knowledge is power. Educate yourself on SCD, and be your own advocate! Speak up for yourself and for others! SCD is a very serious health condition, and we need to do this together.
When you experience discrimination due to SCD, educate them and make them aware of the disease! There will always be myths because of the unknown and grey areas. It’s our responsibility as advocates to decrease the grey areas and to educate others. Together, we can change the world. Together, we can help develop a healthy and responsible healthcare system for the warriors.
I want them to know they’re not alone. For so much of my life, I was afraid to speak up. I thought I was the only one suffering from this disease. I want to encourage them to be brave enough to share their stories because it truly does make all the difference. And I want them to be bold enough to write their own stories without feeling defined or limited by the disease.
Having sickle cell has largely shaped who I am today, but I am so much more than my disease. I hope everyone with sickle cell disease knows that and lives their life fully, not concerned with any stereotypes society has about what it means to have sickle cell.
To all of my fellow SCD warriors, my sickle siblings around the world, do not be dismayed! We are born warriors, tried and true. We have lived lives many will never know, will never care to know. Limited in ways, we excel in others. We are the ones who bear it all and still show up youthful in spirit and glowing.
No matter what the world tries to offer you, remember you have your own cards to play. Life is for the living, so live we must! I encourage you, I dare you to find your healing by any means necessary. Do not believe them when they try to get you to give up and die. Keep waving the flag.
How did your country shape your life with sickle cell? Comment below or share your story with us!
What keeps you from sharing your story?