Born with sickle cell and sick from lupus, a young woman is given a second chance after a breakthrough procedure cures her of both!
Madison Tully was born with sickle cell, then a few years ago, she was diagnosed with lupus.
"I would just like scream all the time. I couldn't help it," says Madison.
"It was extremely hard. We sat there and we couldn't do anything. As a dad, you want to fix everything and I couldn't fix it.," says Jeff Tully, Madison's father.
He couldn't but something did. Today, Madison is cured from not one, but two deadly diseases. This 16 year old had few options for recovery including a risky bone marrow transplant rarely done for sickle cell patients and not an option for most lupus sufferers.
"It's very rare to have a match for anyone with sickle cell," explains Julie Kanter, MD, Director of Sickle Cell Center of Southern Louisiana and Assistant Professor of Pediatric Hematology-Oncology at Tulane University School of Medicine.
There was another obstacle, Madison needed a perfect bone marrow match but, Madison was adopted. Luckily, she made contact with her biological sister.
"We started texting and then one day when I was really, really sick, we just asked her for the favor," says Madison.
Kanter tried the first documented case of using a bone marrow transplant to rid Madison of both diseases. There was an 85 percent chance of a cure but a 25 percent risk of death.
"Madison was in such severe pain she understood the risk herself, but was in such severe pain, that she knew this was not a way she wanted to live, " says Kanter.
After weeks of chemotherapy, then immuno-therapy the transplant was done.
"It took five months after the transplant to actually feel it," says Madison.
A year later, Madison is cured!
"She has no evidence of either in her body and what's remarkable about Madison is we've done biopsies of her kidneys where her lupus was most severe and we actually see a reversal of the organ dysfunction there," says Kanter.
Now, Madison's focused on graduating and becoming a nurse.
"When people were helping me it made me feel good so I want to help people," says Madison.
Now her dad has other things to worry about. "Not the graduating, not the driving, it's the male species, that may be my biggest fear right now," he says.
Having both lupus and sickle cell is extremely rare. There are only a dozen documented cases in the world. Doctors learned information from Madison's procedure that may improve the process of bone marrow transplant for sickle cell disease. They hope Madison's recovery will encourage patients with severe lupus to consider bone marrow transplant as a treatment alternative.