Caldwell resident fighting battle with multiple sclerosis
Posted: Thursday, March 12, 2015
By NICOLE BITETTE Staff Writer
http://www.newjerseyhills.com/the_progress/news/caldwell-resident-fighting-battle-with-multiple-sclerosis/article_485765e8-b8da-5d84-84b6-882648842ec1.html
CALDWELL — Eleni Christoforou, 32, hopes that a hematopoietic stem cell transplant (HSCT) will strike a decisive blow in her decade-long battle with multiple sclerosis (MS).
The Caldwell resident said the goal is to erase any memory of the disease from her body.
However, even with insurance coverage, the procedure will cost Christoforou roughly $20,000 between traveling to Chicago, where the transplant is done, and the other costs associated with removing and reinserting her stem cells, as well as fertility treatments.
Multiple sclerosis is an autoimmune disease that disrupts the brain’s ability to communicate with the body. The hematopoietic stem cell transplant will remove Christoforou’s stem cells from her bone marrow and then she will undergo chemotherapy before her own stem cells are injected back into her system with hopefully no memory of the MS, she explained.
Christoforou’s first symptoms left her unable to walk up the stairs, bumping into walls, losing her memory and confused. There were days where she would forget how to get home or how she arrived at work, she said.
She had a particularly bad episode in July of 2014 that left her unable to speak, walk, see and even feed herself. She spent a week in the hospital followed by two weeks at Kessler Institute for Rehabilitation, she said. She then spent another eight weeks in outpatient therapy in order to recover.
“It was a long road, but with lots of hard work and praying, you would never know that had happened to me by looking at me,” she said.
After this episode, she was perusing Facebook for MS groups when one of the suggestions was a group for patients of Dr. Richard K. Burt’s Stem Cell Study at Northwestern University in Chicago.
Christoforou was diagnosed with MS at age 22 in 2005. It was her senior year of college and for awhile, she thought the symptoms were stress accruing from a busy year, but it unfortunately ended up being much worse than that, she said.
At the time of her diagnosis, she joined AOL chat rooms, which she said were popular at that time, about the disease where she spoke to someone named Rob from Maryland who had the HSCT procedure during a more advanced stage of MS.
Christoforou said that to this day she cannot find Rob, but when she realized the procedure done by Burt was the same one, she knew it was the right thing for her to hopefully live a life free of MS.
Lifelong Friends
Christoforou and friend from West Caldwell, Tara Tortoriello, started a YouCaring page in order to raise the $20,000 Christoforou would need for the procedure. Currently, they have raised $2,535 with 78 days left to go.
Tortoriello felt it could not hurt to try and raise money for her friend.
“I am hoping for the best for everything,” Tortoriello said. “I hope to get this stopped in its tracks and you know maybe there will be repairing as well. We just want to stop it.”
Tortoriello and Christoforou have been friends since their time together at Noecker Elementary School in Roseland. In seventh grade, Christoforou moved to Caldwell and in ninth grade, Tortoriello moved to town as well. The two attended James Caldwell High School together and later spent a few years together at Montclair State University, where they lived as roommates for a year.
Tortoriello was nearly in tears when she started talking about her friend’s journey with MS.
“It’s always difficult to see someone you love go through something like this,”Tortoriello said. “It has been a long 10 years, but they have also flown by.”
Tortoriello added that Christoforou used to run circles around everyone and it is crazy to think how she has to be so cautious when doing most things now.
The YouCaring fundraising page for Eleni’s Journey can be found at, www.youcaring.com/medical-fundraiser/eleni-stem-cell-journey-for-a-life-free-of-ms/299313.
The Transplant Process
The procedure would require Christoforou to head out to Northwestern University Hospital in Chicago for three to four weeks to begin pre-testing and the harvesting of her stem cells. After this, she will return home for about a month and then it is back to Chicago for hospitalization between 14 and 18 days and at this time she will undergo chemotherapy.
Currently, Christoforou takes infusions of the MS drug, Rituxan, every six months, which leaves her sick for about a month following the infusions, she said.
Although Christoforou was not a candidate for Burt’s study due to previous chemotherapy, he took her on as a patient because he felt she could benefit from the procedure and multiple MS medications have failed her.
Other MS treatments only slow down the disease but this procedure could be a “one and done” solution, she said.
She is also a good candidate for the procedure because she is at the stage where most people transition into the secondary stage where her condition could deteriorate, Christoforou said.
Only about 75 people were accepted this year so Christoforou said she feels extremely lucky to have this opportunity.
“I know there is a chance that it may not work, and are risks with procedures for me it’s worth it and if it doesn’t work for me I’m right back where I started,” she said. “The greater the risk, the greater the reward.”
Some of the side effects of the procedure include fertility issues and a small percentage chance of developing a blood-related cancer.
On Valentine’s Day, Christoforou started fertility treatments but only three embryos made it to the freezer, she said. She is hoping to begin another round of fertility treatment on Tuesday, March 17, so that she could preserve more embryos before the transplant, she said.
“I’d rather have MS and have children than not have MS and not be able to have children,” she said.
However, she is hoping the HSTC will allow her to live an MS free life where she could have a normal lifestyle and take care of a family.
Due to the memory loss, headaches, tiredness, trouble sleeping, muscle spasms and other symptoms, Christoforou has been unable to work for years, making the cost of transplant even more difficult for her to cover.
The initial steps towards the HSTC would take place beginning in July and she hopes to be MS free by her 33rd birthday in August.
“It would be a great birthday present,” she said.
Posted: Thursday, March 12, 2015
By NICOLE BITETTE Staff Writer
http://www.newjerseyhills.com/the_progress/news/caldwell-resident-fighting-battle-with-multiple-sclerosis/article_485765e8-b8da-5d84-84b6-882648842ec1.html
CALDWELL — Eleni Christoforou, 32, hopes that a hematopoietic stem cell transplant (HSCT) will strike a decisive blow in her decade-long battle with multiple sclerosis (MS).
The Caldwell resident said the goal is to erase any memory of the disease from her body.
However, even with insurance coverage, the procedure will cost Christoforou roughly $20,000 between traveling to Chicago, where the transplant is done, and the other costs associated with removing and reinserting her stem cells, as well as fertility treatments.
Multiple sclerosis is an autoimmune disease that disrupts the brain’s ability to communicate with the body. The hematopoietic stem cell transplant will remove Christoforou’s stem cells from her bone marrow and then she will undergo chemotherapy before her own stem cells are injected back into her system with hopefully no memory of the MS, she explained.
Christoforou’s first symptoms left her unable to walk up the stairs, bumping into walls, losing her memory and confused. There were days where she would forget how to get home or how she arrived at work, she said.
She had a particularly bad episode in July of 2014 that left her unable to speak, walk, see and even feed herself. She spent a week in the hospital followed by two weeks at Kessler Institute for Rehabilitation, she said. She then spent another eight weeks in outpatient therapy in order to recover.
“It was a long road, but with lots of hard work and praying, you would never know that had happened to me by looking at me,” she said.
After this episode, she was perusing Facebook for MS groups when one of the suggestions was a group for patients of Dr. Richard K. Burt’s Stem Cell Study at Northwestern University in Chicago.
Christoforou was diagnosed with MS at age 22 in 2005. It was her senior year of college and for awhile, she thought the symptoms were stress accruing from a busy year, but it unfortunately ended up being much worse than that, she said.
At the time of her diagnosis, she joined AOL chat rooms, which she said were popular at that time, about the disease where she spoke to someone named Rob from Maryland who had the HSCT procedure during a more advanced stage of MS.
Christoforou said that to this day she cannot find Rob, but when she realized the procedure done by Burt was the same one, she knew it was the right thing for her to hopefully live a life free of MS.
Lifelong Friends
Christoforou and friend from West Caldwell, Tara Tortoriello, started a YouCaring page in order to raise the $20,000 Christoforou would need for the procedure. Currently, they have raised $2,535 with 78 days left to go.
Tortoriello felt it could not hurt to try and raise money for her friend.
“I am hoping for the best for everything,” Tortoriello said. “I hope to get this stopped in its tracks and you know maybe there will be repairing as well. We just want to stop it.”
Tortoriello and Christoforou have been friends since their time together at Noecker Elementary School in Roseland. In seventh grade, Christoforou moved to Caldwell and in ninth grade, Tortoriello moved to town as well. The two attended James Caldwell High School together and later spent a few years together at Montclair State University, where they lived as roommates for a year.
Tortoriello was nearly in tears when she started talking about her friend’s journey with MS.
“It’s always difficult to see someone you love go through something like this,”Tortoriello said. “It has been a long 10 years, but they have also flown by.”
Tortoriello added that Christoforou used to run circles around everyone and it is crazy to think how she has to be so cautious when doing most things now.
The YouCaring fundraising page for Eleni’s Journey can be found at, www.youcaring.com/medical-fundraiser/eleni-stem-cell-journey-for-a-life-free-of-ms/299313.
The Transplant Process
The procedure would require Christoforou to head out to Northwestern University Hospital in Chicago for three to four weeks to begin pre-testing and the harvesting of her stem cells. After this, she will return home for about a month and then it is back to Chicago for hospitalization between 14 and 18 days and at this time she will undergo chemotherapy.
Currently, Christoforou takes infusions of the MS drug, Rituxan, every six months, which leaves her sick for about a month following the infusions, she said.
Although Christoforou was not a candidate for Burt’s study due to previous chemotherapy, he took her on as a patient because he felt she could benefit from the procedure and multiple MS medications have failed her.
Other MS treatments only slow down the disease but this procedure could be a “one and done” solution, she said.
She is also a good candidate for the procedure because she is at the stage where most people transition into the secondary stage where her condition could deteriorate, Christoforou said.
Only about 75 people were accepted this year so Christoforou said she feels extremely lucky to have this opportunity.
“I know there is a chance that it may not work, and are risks with procedures for me it’s worth it and if it doesn’t work for me I’m right back where I started,” she said. “The greater the risk, the greater the reward.”
Some of the side effects of the procedure include fertility issues and a small percentage chance of developing a blood-related cancer.
On Valentine’s Day, Christoforou started fertility treatments but only three embryos made it to the freezer, she said. She is hoping to begin another round of fertility treatment on Tuesday, March 17, so that she could preserve more embryos before the transplant, she said.
“I’d rather have MS and have children than not have MS and not be able to have children,” she said.
However, she is hoping the HSTC will allow her to live an MS free life where she could have a normal lifestyle and take care of a family.
Due to the memory loss, headaches, tiredness, trouble sleeping, muscle spasms and other symptoms, Christoforou has been unable to work for years, making the cost of transplant even more difficult for her to cover.
The initial steps towards the HSTC would take place beginning in July and she hopes to be MS free by her 33rd birthday in August.
“It would be a great birthday present,” she said.