This is Lauren. She is 6 years old and has a very rare disease called Sickle Cell Anemia. This is a story about how the disease was diagnosed and how it impacted Lauren's life.
Lauren was feeling unwell, was looking very pale, and had a yellow tint to her eyes. In addition to this, Lauren had swelling in her fingers and toes so her mother decided to take her to the doctor.
You look pale sweetie
Mommy I don't feel well... and my fingers look really big.
Hematologist, Dr. Smith, found that she has two sickle cell genes which means she makes an abnormal type of hemoglobin. Hemoglobin is the protein in red blood cells that carries oxygen to all parts of the body. Lauren's organs and tissues aren't getting enough oxygen due to this.
After hearing and seeing the symptoms your daughter has, I gave her a screening test and found that your daughter has sickle cell anemia.
Red blood cell transfusions are given every three to four weeks to reduce stroke recurrence in SCD children by 90%.
I am going to set up a blood transfusion for Lauren and recommend that she drinks plenty of water and takes medicine to ease the present pain.
Throughout Lauren's life, she had to get regular blood transfusions and took Hydroxyurea, a medicine that reduced the number of sickle cells in the blood and painful episodes, so she was able to live a close to normal life.
Although she knew there was no cure, Lauren got married and adopted two kids, to ensure that she wouldn't pass the gene down. Many with SCD pass away due to strokes or organ failure, and Lauren passed due to her irreversible chronic organ failure at the age of 61. The disease caused Lauren to take advantage of the days she felt best, enjoying every moment in life.