Born with sickle cell, and sick from lupus, a young woman has been given a second chance after a breakthrough procedure cured her of both.
"I would just like, scream all the time,” said Madison Tully about the difficulty of everyday life with the ailments. “I couldn't help it.”
Tully was born with sickle cell, then a few years later, she was diagnosed with lupus.
"I would just feel pain all the time."
Tully’s father, would have taken the pain upon himself, if he only could.
"As dad, you want to fix everything and I couldn't fix it," said Jeff Tully.
He couldn't fix it, but something did. Madison is now totally cured from not one, but two deadly diseases.
The 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 Madison’s doctor and Director at the Sickle Cell Center of Southern Louisiana, Julie Kanter.
There was another obstacle. Madison needed a perfect bone marrow match. Complicating that issue was the fact that Madison was adopted. Luckily, she made contact with her biological sister. She said ‘yes,’ and 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.
And a 25 percent risk of death.
But the choice was seemingly easy.
"This was not a way she wanted to live," Kanter explained.
After a month of chemotherapy, then immuno-therapy, the transplant was done.
"It took five months after the transplant to actually feel it," Madison said.
Now, one year later, she is cured.
"She has no evidence of either in her body," Kanter said.
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 joked.
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 transplants for sickle cell disease. They hope her recovery will encourage patients with severe lupus to consider bone marrow transplant as a treatment alternative.
TOPIC: DOUBLE CURE FOR LUPUS AND SICKLE CELL DISEASE
REPORT: MB #3385
BACKGROUND: Sickle cell disease changes normal, round red blood cells into cells that can be shaped like crescent moons. The name comes from the crescent shape of the cells. A sickle is a farm tool with a curved blade that can cut crops like wheat. Normal red blood cells move easily through the blood vessels, taking oxygen to every part of the body. Sickle cells can get stuck and block blood vessels which stops the oxygen from getting through. This can cause pain and harm to organs, muscles and organs. Patients are diagnosed with the disease with a simple blood test. Aside from causing pain, the disease can also lead to anemia, stroke and infections. (www.webmd.com)
Lupus is a chronic inflammatory disease that occurs when the body's immune system attacks the body's tissue and organs. Inflammation caused by lupus can affect different body systems such as the joints, skin, kidneys, blood cells, brain, heart and lungs. Some people are born with a tendency toward developing lupus, which may be triggered by infections, certain drugs or even sunlight. While there's no cure for lupus, treatments can help control symptoms. (www.mayoclinic.com)
SYMPTOMS: Pain is the most common system in individuals with sickle cell disease. The sickled cells get stuck in the blood vessels and block the blood flow causing pain in the hands, feet, belly, back or chest. This pain can last up to hours or even days. People with sickle cell disease often have anemia, caused by a shortage of red blood cells. This causes the individual to be weak or tired and may even look pale or washed out. (www.webmd.com)
The most common signs of lupus include: fatigue and fever, joint pain, stiffness and swelling, butterfly shaped rash on the face that covers the cheeks and bridge of the nose, skin lesions, shortness of breath, chest pain, dry eyes, headaches, confusion and memory loss. (www.mayoclinic.com)
BONE MARROW TRANSPLANT: Bone marrow transplant is a procedure to replace damaged or destroyed bone marrow with healthy bone marrow stem cells. Bone marrow is a soft, fatty tissue inside the bones. Stem cells are immature cells in the bone marrow that give rise to all the blood cells. There are three types of bone marrow transplants: autologous, allogenic and umbilical cord blood transplant. Autologous removes stem cells before receiving high-dosage of chemotherapy and radiation. After the treatment, stem cells are put back into the body. Allegonic is when stem cells are removed from a donor. Lastly, the umbilical cord blood transplant is done by removing the stem cells from the umbilical cord of a new born baby. Since they are so immature, there is a less of a concern if they will match. Bone marrow is removed from the hip while being under general anesthesia.
FOR MORE INFORMATION, PLEASE CONTACT:
Dr. Julie Kanter
Director of Sickle Cell Center of Southern Louisiana
Tulane University School of Medicine
Sickle Cell Center
If this story or any other Ivanhoe story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Marsha Hitchcock at firstname.lastname@example.org.