Revée Agyepong was diagnosed with sickle cell disease as a child. She received a curative stem cell transplant as an adult in November of 2017. Revée is now working as a paediatric sickle cell disease nurse, advocates for others with sickle cell disease, and encourages Black Canadians to sign up as donors. For Canadians between the ages of 17 and 35, you can register online and order a swab kit to be mailed at blood.ca/WhyWeSwab
“I was diagnosed at the age of two. I was a little bit more colicky than the average baby. My parents did all the regular baby checks, you know to make sure I was fed, diapered, slept, all that stuff and I was still quite colicky. They're like you know what maybe there's something else going on and I was sent for additional testing. They found out that I had sickle cell disease.”
“I essentially exhausted all of my other sickle cell care options. Hydroxyurea is the first line of treatment for sickle cell disease, and I was on it for a few years, but it wasn't really doing very much for me. After that, I was started on red cell exchange, which is a high-powered blood transfusion. For the first five years, it worked pretty well, but then towards the last two years, it wasn't really working the same. We were finding that I was still kind of in and out of the hospital. I had exhausted every treatment and we didn't really know what else to do. After some persistence and advocacy, my doctor decided he would just send a consult to the Calgary BMT bone marrow transplant team. They hadn’t done any adult sickle cell transplants before, but they are very experienced in oncology. So, I became the first adult in Alberta to get a stem cell transplant to cure sickle cell disease.”
“I only had two siblings to get tested. My older brother was tested first. We have a five-year age gap and they said he'd be the best bet because he was a man, and he was closer in age. Usually, young men provide better transplant outcomes for the patient. Unfortunately, he was not a match and I was devastated but thankfully they tested my sister shortly after. Even though she had already had two kids and she's 11 years older than me, the stars aligned, and everything worked out for us. That's how I knew God had a plan because my sister ended up being a 10 out of 10 perfect match! She was more than willing to kind of put her life and her family on hold to really and truly save my life.”
“It is such a blessing to have a match within your own family because the percentages are just so low. They told me it was a 25% chance that you would have a match in your family and only a 14% chance that that match will not have sickle cell disease. So, it is truly a blessing that my sister ended up being a match and was so willing to donate. It honestly makes me teary-eyed how big of a sacrifice she made for me. She is a mom, wife and she has a full-time job and a household to run, so the fact that she was able to leave her family in Edmonton to spend time with me, not only for the stem cell donation, she really and truly put her life on pause so she could find a way to help me and save mine. I just thought that was amazing and I don't think anyone can top that. She was so willing to donate, I didn't have to ask her or force her. When she found out she was a match, there was no question about it, she was excited and ready. Regardless of the anxiety and nervousness that could come into one’s mind, she still kept pushing forward and decided to be my donor and I am so thankful for that.”
“Having sickle cell disease kind of puts you in a box and makes you feel like you can't dream to the fullest. It makes you feel like there are certain things that you are restricted from. After I had the transplant, I just felt that the barrier, that box, those limitations, were lifted from my life. And I could explore a little more, I could dream a little bigger, I could achieve some things I never would have dreamt of and that was amazing. I learned how to do things that with sickle cell disease were just not possible. I'm excited to travel, hopefully to exotic countries that I wasn't able to visit in the past because before if I were to travel, I would have needed to ensure that I was near a hospital at all times in case of a sickle cell related issue.”
“I was always someone that was in and out of the hospital and so I always saw the patient perspective and saw how important it was as a nurse to provide family-centered care as well as really and truly just being there for the patients because what they are dealing with, you are making a massive impact in their lives. I became a nurse because of my hospital experiences, I was just so touched by the way nurses took care of me in the hospital. I have vivid memories from being a child and being alone in the hospital. I remember the nurses going above and beyond to make me feel loved and cared for. After that, I said to myself that I needed to find a way to pay it forward and I feel so privileged that every single day, I get to be that person for someone. I definitely think my health has affected me in that way and made me a better person and overall a better nurse.”
“I was not prepared to be an advocate, but I was surged into this role, post stem cell transplant, just becoming one of the first in Canada to receive a stem transplant for sickle cells. A lot of people wanted to hear my story, how I got there, how I got through it, everything. I pretty much became this advocate. I was always doing advocacy work for sickle cell disease, but this has added an extra layer of stem cell transplant that has given me a little bit more insight and awareness into the medical system and the challenges patients might experience. I work with a local foundation and we collaborate in finding ways to bridge the gap between the patient and the hospital. As well as I run my own blog and a website and I find a lot of people are contacting me to speak at their functions, whether they are physicians wanting me to provide some enlightenment by sharing my story or teaching nurses how to care for sickle cell patients and sickle cell transplant patients effectively. By sharing my story with the sickle cell community, I want to help inspire them in hope and faith.”
“With COVID-19 I've kind of been taking the regular precautions that everyone else has been. I'm ensuring good hand hygiene, staying masked up, distanced, staying home, and just limiting contacts. But I do find that having a transplant adds an extra layer, just because I was immunocompromised. My immune system has since recovered, but I kind of fall in this gray area where doctors are not 100% sure about me. If I'm completely safe or if there are you know still going to be some challenges. And just with the rest of my health issues, I know I am a little bit more at risk. I just try my best to be as safe as possible.”
“I really didn't know too much about stem cell transplant and donation before my transplant. I didn't realize how simple it is to get a quick cheek swab and then add yourself to the stem cell donor registry. I really wish that more people would do so because in my case I was very fortunate that my sister was a match. It's such a slim chance to have a matched sibling donor and I was fortunate enough to have one. It really puts things into perspective for me, and it really makes me feel sad and worried about those who don't have access to a matching donor. Especially, people of colour, there aren’t as many Black people on the registry so it's harder for them to come upon a match. I just really couldn't imagine how difficult it could be to have a life-threatening illness and be waiting for a stem cell transplant, but not have any match because people aren't putting themselves on the registry. I really, really hope that with more education and exposure we can increase the number of people that are willing to get into the registry, as well as, eventually donate.”
“I think often we focus just on blood donation, but we forget that stem cell transplant is life-saving, so is blood donation, and it is also very important, but we don’t think about it. I know before I had transplant, I was pretty ignorant to the fact of how many people really can access stem cells and who need them for life-saving treatments. I think as more people are getting it done, there will hopefully be more exposure, hopefully through my story, more people can understand what it can do for patients in need. And to people of color, I really want to encourage us to support each other because you are more likely to find a donor within your own race, and it is so much harder for people of color to find matches, especially in North America because there are not that many of us. So, I really hope that my story can help shed some light on what stem cells can do for someone and hopefully, that will encourage more people to give and donate stem cells.”