Thanks to member Jennifer for this story.
http://www.newsobserver.com/news/local/counties/wake-county/article62045372.html
BY TAYLOR KNOPF
Dana George has been snowboarding for two decades, but the sport becomes more challenging for her each year.
During a recent trip to Snowshoe Mountain in West Virginia, George’s husband, Billy, strapped on the board for her, helped her on and off the chair lift and gave her a push down the hill. After a couple of runs, the pain in her legs was too severe and she had to stop.
George, 42, has multiple sclerosis, a disease in which the immune system causes nerve damage that disrupts communication between the brain and the body. There is no cure.
But George, a Raleigh mother of two girls ages 9 and 14, is preparing for a hematopoietic stem cell transplant in an attempt to stop the progression of the disease.
The procedure for multiple sclerosis patients is still in clinical trials in the United States. George said she applied to take part in the trials but was denied because she didn’t fit the criteria.
Unwilling to wait what could be years for the treatment to become available in the U.S., George plans to travel to Mexico this fall for the stem cell transplant.
The procedure costs $54,500 and is not covered by the family’s insurance. So the Georges are trying to raise $60,000 to cover the medical and airfare expenses through HelpHOPELive, an online giving site.
George, who was diagnosed with MS when she was 19, is slowly losing the ability to use her right leg. Her foot drags as if she has a ball and chain attached to it. She has pain and numbness in her legs, fatigue, muscle spasms, occasional slurred speech and issues with cognitive coordination and balance.
“The girl who falls all the time, that was me,” George said.
Even simple tasks such as taking a shower are tough. Her body doesn’t handle heat well, so she feels like she’s melting under hot water and has to sit down.
There are various stages of MS, and George’s disease is classified as secondary progressive. She fears if she doesn’t act now, she will end up in a wheelchair.
She cannot work, but she keeps busy driving her daughters to school, swim practice and soccer games.
“I’d love to work again,” George said. “I just feel like I want to be a productive member of society again and be out there doing things. I want to find something new. Once I get a new body, I want to get a new purpose.”
She would also love to be free of medication. The drugs aren’t stopping the progression of the disease, and the pain medications make her foggy.
Dr. Guillermo José Ruiz-Argüelles has been treating MS patients through stem cell transplants for several years at Clinica Ruiz in Puebla, Mexico, about 80 miles southeast of Mexico City.
The doctor has become well-known to some MS patients in the U.S., partly through social media support groups. He is a distinguished alumnus of the Mayo Clinic, a highly regarded U.S. medical institution.
How it works
Stem cell transplants have been used to treat MS patients around the world since 1996, according to Clinica Ruiz’s website.
It’s typical for treatments to be used in other countries, particularly in Europe and Latin America, before they are approved in the United States, where regulations are often more stringent, said Bob Nellis, a Mayo Clinic communications consultant.
At Clinica Ruiz, the three-week transplant procedure involves removing a patient’s own stem cells and freezing them. Then the patient undergoes a low-dose chemotherapy regimen and their stem cells are returned to repair the immune system.
“It’s like rebooting your computer,” said George, who has talked to and seen videos of MS patients who have had the treatment. She said it’s amazing to see them walking up stairs and running.
“You just look at them … and think, ‘That could be me someday!’ ”
About 2.3 million people worldwide have MS, according to the National Multiple Sclerosis Society. The average American has a 0.1 percent chance of developing it.
The disease can occur at any age, but most patients are diagnosed between the ages of 20 and 50. Women and white people are more likely to develop MS than any other population group.
There are several types of MS, and the severity of symptoms and level of disability vary greatly, said Silva Markovic-Plese, an associate professor in the neurology department at UNC.
“Some people don’t even know they have MS until they get an MRI for headaches or after a car accident and it shows lesions on the brain,” she said. “Some of them may never even develop symptoms.”
The majority of patients have what is classified as relapsing-remitting MS, with flare-up symptoms that go away on their own. About 70 percent of MS patients eventually need help walking, Markovic-Plese said.
For some patients, the disease takes a larger toll.
“Some progress rapidly and lose the ability to walk or see,” Markovic-Plese said. “It’s hard to predict the future disease course at the time of its first presentation.”
Other types of treatment
Many cases of MS can be managed with medication. Markovic-Plese said there has been “an explosion” of treatment options in recent years, and about 13 oral and injection therapies are in use.
UNC is not participating in stem cell transplant research for the disease, and Markovic-Plese said she thinks the medical community still needs to see larger studies on the treatment to gather sufficient data.
Dr. Richard Burt is collecting such data at Northwestern University in Chicago, where he is conducting randomized clinical trials. About 30 years ago, Burt saw a similar stem cell transplant used to treat leukemia patients, and he wondered if it could be used to also treat MS.
Burt said he has used the treatment on 150 patients in the past 13 years and the results have been “stunning.”
“We’ve seen improved quality of life and reversed neurological disability,” he said. “No drug does that.”
As Burt finishes randomized trials and publishes his final report in the coming years, he hopes medical centers across the country will use the procedure to treat MS patients.
But Burt said the treatment is most effective for patients with relapsing-remitting MS.
“In the transition between relapsing-remitting and secondary progressive – in the early stages – we can help, but late secondary progressive we cannot,” Burt said.
Markovic-Plese said every new treatment, including the stem cell transplant, should be compared against what is already available.
“It’s hard to decide if a person is at such a high risk of disability from the disease to qualify them for such an aggressive therapy,” she said.
Positive spirit
George’s mother, Kari Kegl, said it’s great to see the support and donations from friends. People come to the door with checks, she said.
“They are so loving,” Kegl said. “And Dana is an absolute dream of a girl. She is a doll and we all love her. We hate to see this taking her down.”
Through it all, George has kept a positive spirit and a sense of humor. Though she will lose her long, thick hair during the chemotherapy treatment, she’s excited to see the chemo-effect curls grow in. She might dye her hair rainbow colors before she shaves it off.
And just maybe, George will be back on her snowboard next winter with more energy than ever before.
Knopf: 919-829-8955; @tayknopf
http://www.newsobserver.com/news/local/counties/wake-county/article62045372.html
BY TAYLOR KNOPF
Dana George has been snowboarding for two decades, but the sport becomes more challenging for her each year.
During a recent trip to Snowshoe Mountain in West Virginia, George’s husband, Billy, strapped on the board for her, helped her on and off the chair lift and gave her a push down the hill. After a couple of runs, the pain in her legs was too severe and she had to stop.
George, 42, has multiple sclerosis, a disease in which the immune system causes nerve damage that disrupts communication between the brain and the body. There is no cure.
But George, a Raleigh mother of two girls ages 9 and 14, is preparing for a hematopoietic stem cell transplant in an attempt to stop the progression of the disease.
The procedure for multiple sclerosis patients is still in clinical trials in the United States. George said she applied to take part in the trials but was denied because she didn’t fit the criteria.
Unwilling to wait what could be years for the treatment to become available in the U.S., George plans to travel to Mexico this fall for the stem cell transplant.
The procedure costs $54,500 and is not covered by the family’s insurance. So the Georges are trying to raise $60,000 to cover the medical and airfare expenses through HelpHOPELive, an online giving site.
George, who was diagnosed with MS when she was 19, is slowly losing the ability to use her right leg. Her foot drags as if she has a ball and chain attached to it. She has pain and numbness in her legs, fatigue, muscle spasms, occasional slurred speech and issues with cognitive coordination and balance.
“The girl who falls all the time, that was me,” George said.
Even simple tasks such as taking a shower are tough. Her body doesn’t handle heat well, so she feels like she’s melting under hot water and has to sit down.
There are various stages of MS, and George’s disease is classified as secondary progressive. She fears if she doesn’t act now, she will end up in a wheelchair.
She cannot work, but she keeps busy driving her daughters to school, swim practice and soccer games.
“I’d love to work again,” George said. “I just feel like I want to be a productive member of society again and be out there doing things. I want to find something new. Once I get a new body, I want to get a new purpose.”
She would also love to be free of medication. The drugs aren’t stopping the progression of the disease, and the pain medications make her foggy.
Dr. Guillermo José Ruiz-Argüelles has been treating MS patients through stem cell transplants for several years at Clinica Ruiz in Puebla, Mexico, about 80 miles southeast of Mexico City.
The doctor has become well-known to some MS patients in the U.S., partly through social media support groups. He is a distinguished alumnus of the Mayo Clinic, a highly regarded U.S. medical institution.
How it works
Stem cell transplants have been used to treat MS patients around the world since 1996, according to Clinica Ruiz’s website.
It’s typical for treatments to be used in other countries, particularly in Europe and Latin America, before they are approved in the United States, where regulations are often more stringent, said Bob Nellis, a Mayo Clinic communications consultant.
At Clinica Ruiz, the three-week transplant procedure involves removing a patient’s own stem cells and freezing them. Then the patient undergoes a low-dose chemotherapy regimen and their stem cells are returned to repair the immune system.
“It’s like rebooting your computer,” said George, who has talked to and seen videos of MS patients who have had the treatment. She said it’s amazing to see them walking up stairs and running.
“You just look at them … and think, ‘That could be me someday!’ ”
About 2.3 million people worldwide have MS, according to the National Multiple Sclerosis Society. The average American has a 0.1 percent chance of developing it.
The disease can occur at any age, but most patients are diagnosed between the ages of 20 and 50. Women and white people are more likely to develop MS than any other population group.
There are several types of MS, and the severity of symptoms and level of disability vary greatly, said Silva Markovic-Plese, an associate professor in the neurology department at UNC.
“Some people don’t even know they have MS until they get an MRI for headaches or after a car accident and it shows lesions on the brain,” she said. “Some of them may never even develop symptoms.”
The majority of patients have what is classified as relapsing-remitting MS, with flare-up symptoms that go away on their own. About 70 percent of MS patients eventually need help walking, Markovic-Plese said.
For some patients, the disease takes a larger toll.
“Some progress rapidly and lose the ability to walk or see,” Markovic-Plese said. “It’s hard to predict the future disease course at the time of its first presentation.”
Other types of treatment
Many cases of MS can be managed with medication. Markovic-Plese said there has been “an explosion” of treatment options in recent years, and about 13 oral and injection therapies are in use.
UNC is not participating in stem cell transplant research for the disease, and Markovic-Plese said she thinks the medical community still needs to see larger studies on the treatment to gather sufficient data.
Dr. Richard Burt is collecting such data at Northwestern University in Chicago, where he is conducting randomized clinical trials. About 30 years ago, Burt saw a similar stem cell transplant used to treat leukemia patients, and he wondered if it could be used to also treat MS.
Burt said he has used the treatment on 150 patients in the past 13 years and the results have been “stunning.”
“We’ve seen improved quality of life and reversed neurological disability,” he said. “No drug does that.”
As Burt finishes randomized trials and publishes his final report in the coming years, he hopes medical centers across the country will use the procedure to treat MS patients.
But Burt said the treatment is most effective for patients with relapsing-remitting MS.
“In the transition between relapsing-remitting and secondary progressive – in the early stages – we can help, but late secondary progressive we cannot,” Burt said.
Markovic-Plese said every new treatment, including the stem cell transplant, should be compared against what is already available.
“It’s hard to decide if a person is at such a high risk of disability from the disease to qualify them for such an aggressive therapy,” she said.
Positive spirit
George’s mother, Kari Kegl, said it’s great to see the support and donations from friends. People come to the door with checks, she said.
“They are so loving,” Kegl said. “And Dana is an absolute dream of a girl. She is a doll and we all love her. We hate to see this taking her down.”
Through it all, George has kept a positive spirit and a sense of humor. Though she will lose her long, thick hair during the chemotherapy treatment, she’s excited to see the chemo-effect curls grow in. She might dye her hair rainbow colors before she shaves it off.
And just maybe, George will be back on her snowboard next winter with more energy than ever before.
Knopf: 919-829-8955; @tayknopf