Madison Tully was born with sickle cell. Then a few years ago she was diagnosed with lupus.
"I would just feel pain all the time," Madison said.
"As dad, you want to fix everything and I couldn't fix it," said 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," said Julie Kanter, MD, Director of Sickle Cell Center of Southern Louisiana, Assistant Professor, Pediatric Hematology-Oncology 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. She said yes--and Tulane University's 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.
"This was not a way she wanted to live," said Kanter.
After a month of chemotherapy, immunotherapy-the transplant was done.
"It took five months after the transplant to actually feel it," Madison said.
A year later, Madison is cured.
"She has no evidence of either in her body," said Kanter.
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."
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.
FOR MORE INFORMATION, PLEASE CONTACT:
Dr. Julie Kanter
Director of Sickle Cell Center of Southern Louisiana
Tulane University School of Medicine
Sickle Cell Center
(504) 988-5413
SCCL@tulane.edu
