The Sickle Cell Association of New Jersey Talks Delayed Diagnosis and the Importance of Awareness
Rare Disease Report sat down with Mary LaMar, founder and CEO of The Sickle Cell Association of New Jersey, and sickle cell disease patient Sakiyyah Darden who also works in an administrative support role for the organization.
In RDR’s conversation with the two advocates, they discussed what it’s like to be on the wrong end of a delayed diagnosis, what brought them to working for The Sickle Cell Association of America, and why raising awareness for the rare disease is so important.
Darden: So, my road to diagnosis is probably different from many other people’s road to diagnosis, because most people know that, when you have sickle cell, you’re diagnosed at birth, if you’re lucky. I was not diagnosed at birth; I was diagnosed in my teen years. From before my teen years until I was going up in my teen years, my family – my grandmother and my mom – knew that something was not right, but they didn’t know what it was. They didn’t know what questions to ask. My grandmother came from a generation where you did not question doctors if the doctors said that “this” means “this.” She didn’t know how to work with a doctor to get the answers that she needed. It was like, “Okay. This is what it must be. The doctor said it.” At 16, I started looking into things myself, and I ended up going to the doctor. They did some blood work. They said, “This is what it is; you have sickle cell.” I said, “Okay.” I was afraid at first, but to give something you’ve been dealing with for most of your life a name makes you feel confident; now I know that this is what I have. The challenge became “What do I have to do now?”
LaMar: I got involved with the sickle cell community because it’s an inherited blood disorder that not enough people know about. It does not get enough support and funding and promotion. I had the blessing of working with community-based organizations all throughout the country on their sickle cell disease programs, and it gave me a more in-depth understanding of what individuals who are living with sickle cell disease are dealing with. That’s why I got even more deeply involved with it.
It’s an inherited blood disorder that affects the red blood cells, and oxygen does not get to the internal organs in an efficient manner. It can cause organ damage. It blocks up, and gets hard and sticky in the blood stream, and that can cause excruciating pain and different crises. Individuals who are living with sickle cell disease are dealing with a lot, and they exhibit a lot of courage.
Darden: Living with sickle cell, for me, is hard at times because it often tries to stop me from what I want to accomplish in life. As a CHW, I come across a lot of people who say the same things that I say: the disease stops them from being able to reach the goals that they would like to.
LaMar: I am so inspired by individuals who are living with sickle cell disease, and that’s how I first got involved in the whole sickle cell arena. I was working as a consultant on a national campaign for sickle cell disease, and I came into contact with community based organizations in major cities throughout the country, and they were doing – and are doing – incredible, incredible work. The Sickle Cell Disease Association of America has a conference every year, and there are member chapters all over the country, so through that project, I became more familiar with how sickle cell disease affects individuals, and how little funding and support and awareness there is – especially in comparison to other disease states. This is a condition that affects, primarily, people of color, although it affects all ethnic groups. That’s how I got involved; once I finished working on that particular campaign, I still wanted to be involved in sickle cell disease because I had been touched and inspired by individuals who are living with this.
Darden: In raising awareness, we get to educate people and they become able to make better decisions as they start family planning. That’s really big for me. That’s a big reason why I like to raise awareness and help people understand that what a person with sickle cell is feeling, and what they’re going through.
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For more information about sickle cell disease and the work of the Sickle Cell Association of New Jersey, please visit sicklecellnewjersey.org.