Robin Newsome tries to do it all; she is a mother, a daughter, a friend, a full-time worker in addition to owning her own business and more. On top of all the things she manages, she also fights daily to live with Sickle Cell Anemia; a blood disorder that causes deformed red blood cells in a person’s body and can cause severe, debilitating pain.
Robin’s own mother remembers her as a two-year-old child just crying and crying to the point she was taken to the hospital. As a toddler, Robin was experiencing her first pain crisis and was diagnosed with Sickle Cell disease though today many babies are diagnosed at birth.
Trips to the hospital became a regular part of Robin’s life with sometimes as many as three or four hospital stays a month. This deeply interfered with Robin’s life as a kid and teenager with doctor’s going as far to only give her a life expectancy of about 18 or 19 years old.
Today Robin is in her late forties, defying doctor’s predictions and living her life to the fullest though she still deals with pain and the difficult life that sickle cell presents.
“A lot of people like to say that I’m resilient, strong; a warrior when most times I feel defeated, weak and scared but I try not to complain about the issues that I face…I continue to push through and try to live the life that I can live,” Robin said.
One of the most prominent effects of living with Sickle Cell Disease is feeling extreme pain. Robin says the pain can be located in different parts of her body but is “excruciating.” She also knows her triggers that can cause a pain crisis like cold weather and stress, two things she deals with often living in chilly Chicago and the stresses that come with her everyday life.
One particularly painful memory is her own Sweet 16 birthday party when she was in so much pain she could only watch her friends enjoy her party while laid up on a couch, fighting the pain she was feeling because of Sickle Cell.
Sickle Cell Disease has caused additional complications to her life including acute chest syndrome, pulmonary hypertension, issues with her eyes and more.
For Robin and most people with Sickle Cell Disease, blood transfusions can alleviate some of that pain and help get them out of a crisis. Robin has received many transfusions over the years, even a full body blood exchange when all of her body’s blood was replaced with new blood.
Today, Robin is grateful for a work environment where her supervisors understand her situation and that she has access to the blood transfusions that she credits with saving her life over and over again thanks to volunteer donors who give blood so that it is there on the shelf when she needs it.
“The way blood transfusions have helped me is tremendous. I can feel instant relief when I get one…and I’m just grateful for the people that do donate.”
In the U.S., it is estimated that over 100,000 people have sickle cell disease — most who are of African descent and will require regular blood transfusions to help manage their disease. Beyond Sickle Cell Disease, every two seconds someone in U.S. needs a blood transfusion, from people who experience complicated childbirths, people fighting cancer, and accident victims being raced to emergency rooms.
Robin continues to be thankful for all the blood she has received over the years and how it has helped her manage the pain and the disease.
“Roll up your sleeves and give, it helps not just me but other people who really need it.”
There is no widely used cure for sickle cell disease. However, the Red Cross supports one of the most critical sickle cell treatments of all – blood transfusions. For many patients, a close blood type match is essential and is found in donors of the same race or similar ethnicity.
Sign up to give blood at an upcoming Red Cross blood drive and make a difference to the patients in need of blood.
September is Sickle Cell Awareness Month. Learn more about Sickle Cell Disease here.