“A Matter of Life and Death”

I had to share this story with you all about a woman that went through the Stem Cell Transplant in 2005. I want you to see what she went through and know that Gwen is going through the same thing and will be when we get to Chicago. This story and many others like this give us so much hope. Here is the link to the story below if you want more information (http://bit.ly/HPgwZb). Also if you want to help Gwen on her Journey click here (http://bit.ly/HPkql2):

A Matter of Life and Death

PLAINFIELD — Five years ago, Jennifer Osman was nearly paralyzed.

She was being treated for chronic inflammatory demyelinating polyneuropathy, a neurological disorder known as CIDP that attacked her peripheral nervous system, progressively weakening and numbing her to the point where, at times, she didn’t even have the strength to dial a phone.

Jennifer and Rick Osman will celebrate the five year anniversary of Jennifer’s experimental stem cell treatment for CIDP on April 1. After the treatment, Jennifer has had almost perfect health. “She couldn’t do anything. She couldn’t use her arms, couldn’t walk. I had to carry her to bed. Sometimes I had to feed her,” said her husband, Rick Osman. The disease would have been fatal, likely killing Jennifer, a nurse, before her 40th birthday.

But Osman took a risk on a new treatment. Feeling she had little to lose, she joined a study of stem cell transplants at Northwestern Memorial Hospital run by Dr. Richard Burt, chief of the Division of Immunotherapy, Department of Medicine, Northwestern University Feinberg School of Medicine. Burt pioneered the use of stem cell transplants to treat autoimmune diseases, and, in 2002, Osman became the first CIDP patient in the country to receive a stem cell transplant.

Today, she is nearly symptom-free. “I’ve gotten really used to it,” said Osman, 38, who has not received any treatment for CIDP for two years. “This is my life, a healthy life. Back to normal.”

Helpless and alone

Osman was 30 when she was diagnosed with CIDP, which is considered a chronic counterpart to Guillain-Barre Syndrome. She began immunosuppressant treatment. As the disease progressed, she needed the treatment more frequently. It seemed to be losing effectiveness, she said. Jennifer was at the hospital three or four times a week, connected to a machine for several hours at a time for plasmapheresis. The procedure takes blood out of the body; treats the plasma, which contains the antibodies; and returns all of the blood’s components to the body.

One night, after a particularly hard therapy session, the Osmans sat on their couch contemplating what they had been told that day: Jennifer’s disease could eventually attack the nerves in her lungs and stop her from breathing. Then a TV news report about a breakthrough at Northwestern Memorial Hospital came on. The hospital was successfully treating autoimmune diseases with transplants of the patients’ own stem cells. Jennifer inquired about the procedure and was told she was a candidate. “I felt so helpless and alone because nobody seemed to understand it,” Jennifer said. “I didn’t know what the future was going to hold. This offers help for people.”

Dark days

She began chemotherapy to harvest her stem cells, which were frozen for a month. Five days before the transplant, Jennifer endured high doses of chemotherapy to completely wipe out her immune system.

On April 1, 2005, she received the stem cell transplant. Her immune system slowly began to build itself up two weeks later. For two months afterward, Jennifer could barely function. She was heavily medicated, couldn’t eat, and yet vomited six to eight times a day, which left her face bruised and eyes bloodshot. “I had bad days, where different weird neurological things happened,” she said. “I couldn’t taste food for weeks.”

The Osmans stayed at a hotel near the hospital for five weeks. When they returned home Jennifer was still very weak. At one point, a sinus infection put her in the hospital with a dangerously high fever. There were times she felt the CIDP symptoms return, and she had one more plasma exchange therapy session in May 2005. But that was the last time. She took immunosuppressant medication for a couple of years so her new immune system would grow slowly and was off the medicine by 2008.

20 years in the making

Burt has spent more than 20 years developing the use of stem cells to treat autoimmune diseases. “When I first came up with this idea … people said, ‘Why are you wasting your time?’ I ended up following my passion, and it’s been fabulous,” he said.  Northwestern has done about 350 stem cell transplants, Burt said.

Burt has performed the first stem cell transplants in the country, and sometimes in the world, for patients with many autoimmune diseases, including rheumatoid arthritis, multiple sclerosis, Crohn’s disease and systemic lupus erythematosus. The treatment has come a long way, he said, as Medicare and several insurance companies will now cover it. “The amazing thing is, traditional medicine has just kind of come to a stop with these patients,” Burt said. “What we’ve done is we’ve changed that.”

Sharing her knowledge

Now Osman only has occasional mild symptoms of CIDP, such as fatigue and numbness or tingling when she wakes up. “It’s really important to us that people know (about the stem cell procedure), because we found out about this from watching TV,” Rick said. “If we hadn’t seen that broadcast, she probably wouldn’t be here today.”

Jennifer still works as a nurse, though now she does part-time home care. The Osmans field questions from CIDP patients and their families around the world atwww.caringbridge.org/il/jeno. After April 1, Jennifer plans to update the site’s journal with news that she made it to her five-year anniversary — and that the disease is in remission.

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