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," Madison told Ivanhoe.
"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.," Jeff Tully, Madison's father, told said
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," Julie Kanter, MD, Director of Sickle Cell Center of Southern Louisiana and Assistant Professor of Pediatric Hematology-Oncology at Tulane University School of Medicine, explained.
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," Madison said.
Tulane University's Dr. Julie Kanter tried the first documented case of using a bone marrow transplant to rid Madison of both diseases. There was an 85% chance of a cure but a 25% 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, " Dr. Kanter said.
After weeks of chemotherapy, then immuno-therapy 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 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," Dr. Kanter said.
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," Madison 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," Jeff said.
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.
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.