Sharee Turpin, diagnosed with the Sickle cell disease (SCD) around the age of 2 is a strong advocate for the education and awareness of sickle cell.
Now in her early thirties, Sharee has been in pain for the majority of her life fighting this disease. “The pain you feel physically, mentally takes a toll on you and I wouldn’t want to wish this on my worst enemy,” she said.
Sharee is a recent May 2020 graduate of Syracuse University and has just started a new job as a provider Data and Commutation coordinator with the University of Rochester. She said she will make it her job to advocate and teach others about sickle cell disease.
According to the Center for Disease Control and Prevention’s website, SCD is a group of inherited red blood cell disorders. Healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body. Someone who has SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle”. The sickle cells die early, which causes a constant shortage of red blood cells. Also, when they travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious problems such as infection, acute chest syndrome and stroke.
“I will do everything in her power to make sure more people in the community are aware of what sickle cell is and how many people are being affected by this disease,” said Sharee.
“People need to know their family history.”
Minority Reporter had the pleasure of speaking with Sharee about her passion for building the momentum of awareness around sickle cell disease and the importance of donating blood.
How old were you when you had your first severe pain episode?
I was five years old in Kindergarten, it was during reading time and my ankle started hurting. I remember limping over to my teacher and telling her I don’t feel good and I can barely walk and it felt like they were on fire. I mean bone cursing pain. I was able to get on the school bus and I remember my dad having to pick me up and take me off the bus because the pain was so horrible it feels like you are being cut from the inside out. Nothing really stops the pain and its indescribable what the pain feels like.”
When you have a severe pain episode, what can you do to make yourself feel better?
“Every Sickle Cell Patient is different; we love to educate people on that first. A lot of people slap labels on our disease and think we are all the same. You kind of have to learn what works best for you and your body and pain tolerance. When I go into a pain crisis, I start with Motrin or Ibuprofen. I try to stay warm and hydrate myself. I usually have to take a hot shower and a bath, we usually try everything possible before we go straight to the hospital, if nothing works then that’s the point when we head straight to the Emergency.
How does Sickle Cell affect your family and personal life today?
“There’s good and bad that comes with it; to start with the bad it’s not predictable. So there’s a lot of times I can’t make it to trips, birthday parties, graduation ceremonies, etc. So that’s why I always try to be as honest and open as possible. Sometimes we can view ourselves as a burden to everyone as well. The good that comes with Sickle is that we formed our own community, we learned to speak up for ourselves, because honestly the history of sickle no one does that for us. So we are forced into this position where we have to know what it’s like to depend on us and only us.”
Has the disease changed your entire life in a sense?
“I will say physically yes, there’s things that I will never be able to do and I have come to grips with that like run a marathon, dive off a cliff into cold water. I know my body will not bounce back from that. Spiritually, having this disease has made me stronger, I learned to see the beauty in disabilities and because you are more aware of what you can do then what you can’t do. It’s definitely changed my life and it’s made me stronger but I’m always not going to invalidate what I have been through. I just want to make it better for people that come after me. So children who have sickle now, I never want them to experience what I had to experience when I was a child. People are starting to realize that there was a racial issue that comes with this disease. So everything that I have gone through I have taken that and turned it and said ‘this has to be better from here on out for anyone diagnosed.’”
How would you consider yourself an advocate for Sickle Awareness today?
“I’m actually currently on a research team with the University of Rochester to help the treatment and care of patients with sickle cell who are sent to the ED and admitted. No one knows what to do and they think they know what’s best and they won’t listen to us, so that’s what I’ve been currently working on. I have physics always asking me questions about sickle cell as well. I need doctors to know this is what we go through and we have to trust them, just like they have to trust us. There’s so much more that comes with the pain that we deal with. We also need more people to donate to organizations like the American Red Cross. There’s people that need a blood transfusion every month.
When you are admitted in the hospital what can they do to make you feel better and is there a cure for sickle cell?
There’s nothing they can really do, honestly except give me pain medicine to make the pain go away and if I’m in a need of oxygen they make sure I get some. Treatments include medications, blood transfusions, and rarely a bone-marrow transplant. In order to get a bone-marrow you have to have a sibling and you have to have a match. Once you get past the age of sixteen or seventeen, then you are not a candidate. We feel like we are on a cure called CRISPR; a gene editing program, the National Institute of Health has been working on it for some time. That is the closest thing we have right now that comes close to a cure and it has been around for a few years now.
Has there been any organization in Rochester that supported you directly?
Yes! Roc City Sticklers is the best organization that supports me. We can talk about everything. Was it a good week? Do we need more blood this week? I also have been supported by the Complex Care Center and they have a heart for us and they make sure we are taken care of. I love the support from the people at the University of Rochester.
The ROC City Sicklers is a close-knit family-oriented Advocacy Group for Children and Families living with Sickle Cell Disease. Their goal is to break down individual silos, spread awareness and build strong supportive relationships to those that may need support, as stated on their website.
Sharee said she isn’t sure if she will be alive long enough to ever see the disease go away, but has hope. “There’s definitely a possibility,” she said.
In the meantime, Sharee continues to enjoy her life to the fullest and the best of her ability. Sharee said is doing everything in her power to better the quality of healthcare. She feels as the city of Rochester needs to leans in more and education themselves a little bit more on Sickle Cell
“We will all really benefit from others being aware and please make sure you donate blood.”
Additional information about the American Red Cross can be found at www.redcross.org/.
Roc City Sicklers Advocate Support Group information can be found at www.urmc.rochester.edu/events/event-detail/1244491 or the Roc-City Sicklers Facebook page.