My name is James Griffin, and I was born in Milwaukee Wisconsin and diagnosed with sickle cell disease at the age of two. Growing up, I experienced many painful crises from having sickle cell and I was in and out of the hospital frequently.

After being diagnosed there were many times when I did not understand what was going on inside my body, but the pain was extreme and unbearable, and it was hard for me to describe exactly what it felt like. Many nights it would wake me up out of my sleep and I would cry out for my mother in pain. When I would go through a sickle cell crisis it would feel as though I was being hit repeatedly with a baseball bat and I could not do anything to stop it. Every time it happened, I remember I would crawl onto my bed and try to remain as still as possible. It was as if I were trying to shrink and escape the pain from this fetal position, but there was nothing I could do to stop it because the pain was deep inside my body.

Growing up having sickle cell took on a whole different meaning for me because it made me feel alone and isolated many times throughout my life. And many times, I would question if I were the only one in the world who lived with it because I did not know anyone else in my community who was also dealing with this disease.

Despite being told in an appointment early on by a geneticist that sickle cell affected 100,000 people, there still seemed to be no one around me to whom I could relate. For my parents it was equally hard because they did not know that they were carriers of the sickle cell trait, a gene that could be passed down from both parents to their offspring which could cause the child to inherit the disease. In fact, when I was born my parents thought that I would grow up and have a normal life like my two older siblings because they were healthy and never spent a day in the hospital. However, things would soon change for us when I turned two years old.

By the time I reached the age of two I would experience my first sickle cell crisis. It was a crisis that caused my hand to be severely swollen and puffy, so my parents had to rush me to the nearest hospital. In this hospital visit I had several different tests run on me and days later I would be diagnosed from a blood test with having sickle cell disease—a lifelong chronic illness that could come with many different symptoms that can range from jaundice of the eyes, skin, infections, fatigue and, the most common symptom, painful episodes called a sickle cell crisis.

For many people who were born in the state of Wisconsin before the year 1988 it was common for them to be diagnosed with sickle cell after birth because the newborn screening program had not come into effect until October of 1988. So, as you can imagine, this was difficult for my parents and many other parents of children born with sickle cell at that time.

But as time went on, I continued to deal with my condition and learned how to manage the pain and symptoms that came along with it. The cause of a sickle cell disease crisis can be triggered when the oxygen inside the blood is compromised and changes the red blood cells from its normal round shape to an elongated sickled shape. When that happens it restricts blood flow from passing through the body creating blockages, which, in turn, causes excruciating pain that can last days to weeks at a time, requiring a person to seek immediate medical attention.

A revolving door of treatment

The treatment I needed for a sickle cell crisis required me to go to the hospital for intravenous fluids, opioid pain medication, oxygen and, sometimes, blood transfusions. And from my childhood and even as an adult the hospital was like a revolving door, with a never-ending cycle of emergency room visits, admission, discharge and then re-admission.

However, when I became an adult, I noticed a change in my treatment and care when arriving at the hospital emergency room. Some of the things that I would encounter would be unusually long wait times to be seen by a doctor. Secondly, inadequate dosages of pain medication given to me for my pain. And finally, on many occasions, there were less empathic doctors and nurses that I would encounter who oversaw the management of my care.

In several instances in the emergency room, I also was labelled a “Drug Seeker”, a “Frequent Flyer” and a “Sickler”, which all had negative connotations and stigmas attached to them.  And this was extremely hard to deal with as a sickle cell patient. It was at this point in my life as an adult when I hit an all-time low in dealing with my disease and I did not care if I gave up and quit.

Thankfully, I had the right support system around me in my parents and my three siblings who were there to uplift me with their love and support that I needed to get through my tough times. And from that experience I made the decision that I would do something about it. From then on, I decided to make a change, and open up and share my story, which was something I had not done up to that point in time in my life.  So, I started writing and journaling detailed stories about my emergency room experiences, hospital stays and the effects sickle cell disease had on my overall life.

In March of 2015 I published my first book. It was a memoir titled Breaking Silence: Living With Sickle Cell Anemia. That soon led me into a whole new world known as Advocacy. It was something I was not familiar with at all: I did not understand the influence advocating could have on others and the difference that it could make to help change my life as well as the lives of others.

In this new role as an advocate, I decided that I would share my story, with the intent that I would push for more drug development from pharmaceutical companies to treat sickle cell disease—in 2015 there was only one drug on the market.

Along with that I got involved with different organizations that could help me share my story with legislators, so I could advocate for better laws to prevent the systemic racism that I faced and also provide a healthcare system that supported better care for patients being treated for sickle cell disease. And before long I found myself in rooms full of people who also wanted to help raise awareness for sickle cell patients and provide the support needed to make a change.

Before I set out on my advocacy journey in the year of 2015 there was only one treatment for sickle cell disease. However, since 2017, three new drugs have been added to the market. And more recently on December 8, 2023, the US Food and Drug Administration (FDA) announced news of the first-ever approvals for not one but two gene therapies. A huge step in the right direction and a breakthrough in medicine.

Today, as I look at the state of sickle cell disease, I can say there finally seems to be hope. Hope for a better future with more options for treatment and care. And as there continues to be advancements in medicine, I do believe that gene therapy can be the future for sickle cell disease. But until that time comes, I will remain steadfast and continue to raise sickle cell awareness by advocating for better care, more funding for research and better treatment options.

And despite having sickle cell, I will continue to thrive and not let it define me!

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