Stem cells offer hope for lupus sufferer

Published 5:38 am Friday, October 22, 2004

By By SPIROS GALLOS / Niles Daily Star
NILES - A casual observer would look at Robbin Down and see a typical 50-year-old woman with no apparent illness or malady.
But what they wouldn't see is that Down must take a combination of 16 medications to ease the pain she feels everyday.
Down, a Berrien Springs resident, has been on a daily regiment of more than a dozen blood-thinners, heart and pain medications, and anti-inflammatory medicines for more than 10 years in an effort to curb the symptoms of lupus.
Lupus is an auto-immune disease where the body's immune system can not differentiate between foreign substances and the its own cells and tissue.
As a result of the disease, the immune system creates antibodies, known as auto-antibodies, which attack the body, causing inflammation, injury to tissue, and pain.
But Down's dependence on medications may soon come to an end thanks to a new stem cell treatment she will be undergoing at Northwestern University Hospital in Chicago.
Down will receive an autologous stem cell transplant, a procedure commonly used to cure patients with various forms of cancer, including Hodgkin's Disease and aggressive Non-Hodgkin's Lymphoma, who relapse after chemotherapy.
Through the treatment, stem cells will be extracted from her bone marrow and "cleaned" of any infections, while she undergoes chemotherapy to burn away her infected immune system.
After her immune system is gone and the stem cells are cleaned, they will be re-inserted into her body in the hopes her immune system will rebuild itself using the clean stem cells.
Stem cells are young cells which have the potential to remain as stem cells or develop into more specialized cells such as muscle, brain, and red blood cells.
After the initial treatment, Down will have an immune system similar to a newborn baby, making her very susceptible to infections. She will have to avoid contact with anything that may give her an infection, including foods like fruits and vegetables, for the first six months after surgery.
But the road to recovery will not be easy, for 12 to 18 months after the surgery, Down will have to take a large amount of anti-bacterial, anti-viral, and anti-fungal medications as her immune system rebuilds itself.
After her immune system rebuilds itself, Down will be able to live a normal life without the daily regiment of medications.
Down found out about the treatment a year ago when her doctor, Dr. Kathleen Menerey of Ann Arbor, forwarded Down's medical history to doctors at Northwester University Hospital.
It was in October of 2003 when doctors Richard Burt and Yu Oyama of the hospitals division of immunotherapy contacted Down about the treatment. On Dec. 18, Down traveled to Chicago for a consultation.
Down wants to get the surgery because it will offer her a chance to feel normal, something she said she hasn't felt in 15 years, when she was diagnosed with lupus.
Down was diagnosed with lupus in 1989, at the age of 35, when she was working as a nurse at Heritage Hospital in Taylor, Mich. After getting several frequent infections, Down went to an asthma specialist who prescribed her some antibiotics.
The infections went away while Down took the antibiotics, but after she finished, the infections came back worse than before, Down said.
After similar results after she took anti-inflammatory steroid, Down suggested to her doctor that something might be wrong with her immune system.
After the suggestion, Down took an anti-nuclear antibody test, a common test used to identify lupus patients. When Down's results came back with a high anti-nuclear antibody count, she was diagnosed with lupus.
In November of 1989, Down met Dr. Menerey, who told Down she was surprised she Down had gone as long as she had without being diagnosed with lupus.
Dr. Menerey told Down there was a chance she had developed lupus as early as when she was 14-years-old, Down said.
Down said she went into denial after being diagnosed. She continued to work at the hospital and tried to live her life like a normal person.
Down eventually retired from her career as a nurse in 1997 when Dr. Menerey gave her an ultimatum.
Shortly after quitting her job, Down moved to Philadelphia to live with her sister, Theresa Down, while she saw a specialist there.
It was in 2002 when doctors decided Down needed to seek an alternative treatment to the daily regiment of medication.
Down had developed a pulmonary embolism, a blockage in an artery of her lungs caused by blood clots, which forced her to take blood-thinning medications.
In addition to the blockage of one of her arteries, Down also developed relapsing poly-chondritus, a disease which causes the destruction of the cartilage in the body.
It's taken a lot of work to get ready for the treatment. Down and her family have had to write numerous letters to medicare and the Blue Care Network to receive approval to undergo the procedure.
Down and her family have set up a fund through the National Transplant Assistance Foundation to raise money to cover the cost of the procedure and the medication needed afterwards.
The hospital is also donating funds for the transplant procedure.
The medication Down will need after the surgery will cost about $25,000, which her insurance won't cover. In all, there is about $40,000 in medical bills that Down will have to pay for out of her pocket.
In 2003, Down paid close to $5,600 for her treatments which her insurance wouldn't cover.
Down and her daughter, Erin Dockerty, know there is a possibility she won't live after the surgery.
When Dockerty learned her mother was sick, she didn't think the illness was severe.
Dockerty realized the lupus was more severe when her mother gained almost one hundred pounds in the course of three days because of the disease in 1991, when Dockerty graduated from Andrews Academy.
Dockerty fears that her five-year-old daughter, Grace, won't grow up with her grandmother, who she's become very attached to.
Dockerty said her daughter as played a large role in helping Down forget about her disease.
Anyone wishing to contribute to Robbin Down's fund for her medical bills can call Erin Dockerty at (269) 471-3022.