Rare Autoimmune Disease Goes Into Remission After Stem Cell Therapy

By A. Rahman Ford, PNN Columnist

New research at Northwestern University and the Mayo Clinic confirms that we can heal ourselves with our own stem cells. A small study published in the journal Neurology found that treating a person with stem cells derived from their own blood or bone marrow can reverse a rare autoimmune disease called neuromyelitis optica (NMO).

Also known as Devic Disease, NMO is a chronic neurological disorder that causes inflammation in the optic nerve and spinal cord. Common symptoms are eye pain that can rapidly lead to blindness, and pain in the spine, legs or arms that can lead to paralysis. Bladder and bowel control may also be affected.

Neuromyelitis optica is often misdiagnosed as multiple sclerosis (MS). The normal course of treatment is high-dose corticosteroids and immunosuppressants.

In the study, 13 patients with NMO were first given drugs to suppress their immune system, followed by an infusion of hematopoietic stem cells (HSCT).

The results were significant and durable. After 57 months, most patients were in remission and were off all immunosuppressive drugs.

A biological marker in the blood that correlates with NMO disease activity also disappeared.

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“There is marked difference between a transplant and the drug,” said lead author Dr. Richard Burt, a professor of medicine and chief of immunotherapy and autoimmune disease at Northwestern University Feinberg School of Medicine. “The transplant improved patients’ neurological disability and quality of life. They got better, and the disease maker disappeared for up to five years after transplant.”

Two of the patients relapsed after the HSCT infusion and had to go back on drug therapy.

According to Northwestern Now, Dr. Burt is a pioneer in the field of using autologous stem cells to treat autoimmune disease. Previous research by Burt has shown that HSCT can reverse relapsing-remitting multiple sclerosis, systemic sclerosis and chronic inflammatory demyelinating polyneuropathy.

When interviewed  by The Daily Northwestern about the implications of Burt’s work, Feinberg Associate Neurology Professor Dr. Roumen Balabanov predicted that chronic autoimmune diseases would be treated through “a single, radical approach” that would allow patients to live normal lives without being dependent on medications to control their symptoms.

“The point of this treatment being radical is that the patients will actually have normal lives,” Balabanov said. “They don’t have to take those lifelong medications.”

Those lifelong drugs can cost up to $500,000 per year. Conversely, the HSCT transplant costs about $100,000.

Dr. Burt is currently on sabbatical to teach his HSCT protocol at stem cell clinics around the country and to write a book. Actress Selma Blair recently had her multiple sclerosis treated by Burt’s clinic. She has been very public about her experience on social media and in interviews.

Recently the Scottish Health Technologies Group recommended HSCT be approved in Scotland to treat relapsing-remitting multiple sclerosis.

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A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal.

Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China. 

The information in this column is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Childhood Abuse Raises Lupus Risk for Adult Women

By Pat Anson, PNN Editor

Women who experienced physical or emotional abuse as children have a significantly higher risk of developing lupus as adults, according to new research presented at the annual meeting of the American College of Rheumatology.

Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that causes inflammation in multiple organs. Most patients have times when the disease is active, followed by times when the disease is mostly quiet and in remission. Lupus is far more common in women than men.

In prior work, exposure to stress and stress-related disorders, notably post-traumatic stress disorder, has been associated with increased risk of subsequently developing autoimmune diseases, including lupus,” said lead author Candace Feldman, MD, an Assistant Professor at Brigham and Women’s Hospital/Harvard Medical School.

“Exposure to adverse childhood experiences has specifically been associated with higher levels of inflammation, as well as with changes in immune function.”

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To identify what kind of childhood trauma raises the risk of lupus, Feldman and her colleagues looked at health data for over 67,000 women participating in the Nurses’ Health Study II, an ongoing study of female nurses that began in 1989. There were 93 diagnosed cases of lupus among the women.

In detailed questionnaires, the women were asked whether and how often as children they experienced physical abuse from a family member, or yelling, screaming or insulting remarks from a family member. The women were also asked to recall incidents of sexual abuse by either adults or older children.

Researchers found that physical and emotional abuse were associated with a more than twofold greater risk of developing lupus. But the data did not reveal a statistically significant association between sexual abuse and lupus risk.

The study’s findings suggest that the effects of exposure to physical and emotional abuse during childhood may be more far-reaching than previously appreciated,” said Feldman. “The strong association observed between childhood abuse and lupus risk suggests the need for further research to understand biological and behavioral changes triggered by stress combined with other environmental exposures. In addition, physicians should consider screening their patients for experiences of childhood abuse and trauma.”

This is not the first study to find an association between childhood trauma and chronic illness in adults. A recent study of 265 adults in New York City found that those who experienced more adversity or trauma as children were more likely to have mood or sleep problems as adults -- which in turn made them more likely to have physical pain.

Another study found that children who witness domestic violence between their parents are significantly more likely to experience migraine headaches as adults. A large survey also found that nearly two-thirds of adults who suffer from migraines experienced emotional abuse as children.

Miss Understood: A Mother’s Greatest Fear

By Arlene Grau, Columnist

As a mother your main goals are to raise your children to lead happy lives, to always love them, and to keep them safe. I want to see my children excel and get a lot further in life than anything I've ever dreamed of.

Although I have many hopes and aspirations for my two daughters, my worst fear is always lingering in the back of my head.

What if I cursed one of my daughters with a genetic predisposition for an autoimmune disease? What if they develop arthritis or lupus? I could never forgive myself if I knew they were meant to endure the suffering I've lived through.

I would give anything if they would never have to worry about seeing a medical specialist, or needing infusions, blood draws and painkillers just to get by. They already see a pain sufferer’s life through a child’s point of view and that alone is very difficult to handle for a 5 and 9-year old. But burdening them with this lifestyle would be cruel in and of itself.

I'd like to think that I could handle any amount of pain you throw at me. I'll shed some tears and break down a bit, but I think of myself as a genuinely strong individual. However, if you involve my children, then all bets are off and I become vulnerable.

When my oldest daughter was born I suffered from preeclampsia (high blood pressure) and she was born prematurely. She weighed just 4.6 lbs. at birth and was in the neonatal intensive care unit for two weeks.

The day after I was discharged, I was back at her bedside from the time visiting hours began until it was time to go home. She ended up needing surgery at 8 weeks and it was the worst experience I've ever been through.

I can remember how much I wanted both my girls to come home from the hospital with me so I can just love and protect them. My desire for children was always about how much I wanted a family, but I never stopped to think about the possibility of passing down an autoimmune  disease. Now anytime my kids tell me their back or hands hurt, I subconsciously think that it might be arthritis.

I think I may always feel that way. Not only because I'm blaming myself for any pain they may be feeling, but because I know that these diseases do not discriminate against any age group.

Arlene Grau lives in southern California with her family. Arlene suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Miss Understood: How Arthritis Has Changed Me

By: Arlene Grau, Columnist

I've been noticing several changes in myself since turning 30 this past August, most of which are physical and have more to do with my lupus and rheumatoid arthritis (RA). I've never been the type of person who cares about her looks or what people think about me. However, when I began noticing large nodules forming on my fingers and persistent swelling around my wrists and knuckles I became more self-conscious.

It became especially embarrassing one day when I went to share how I had noticed certain nodules getting bigger and a friend said, "Wow that looks gross." I guess in a way I expected her to be more sympathetic about my situation, but some people may never understand.

I have some fingers that I can hardly bend and others that remain stiff for hours. Most of my fingers have become swollen and tender to the touch. I'd say my hands have suffered the most due to my RA and it makes life that much more difficult.

Just a few weeks ago I woke up unable to walk, so I ended up in the hospital. After having x-rays and an MRI, they ended up finding a labral tear and severe arthritis damage in my right hip, hence the reason why I couldn't walk.

I saw an orthopedic surgeon who said I can either have surgery now to repair it or get a cortisone injection to see if it helps temporarily, but based on the amount of damage my hip has I'm going to need a hip replacement in a few years. That news hit me like a ton of bricks.

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I'm only thirty years old and I already have to mentally prepare myself for a future hip replacement? Not because I fell or because I broke it, but because my arthritis is so advanced that it ate away at my hip. It's a lot to take it. I feel like every time I've gotten tests done, whether its blood work or an MRI, they always find something that I don't want to hear about.

All of this and people still tell me that I don't look sick, they question my illness, or the severity of it. They question why I no longer work or what I do all day. They assume I must be having a wonderful time while my kids are at school. All assumptions because they either enjoy gossiping or they don't want to bother sitting down and getting the facts from me.

At a glance I may look like any other person. But up close you can see that I'm not your average mom or housewife.

My diseases have caused so much to my body. I have so many battle wounds and stories. Some untold, some I've cried about, and some I'm proud I've overcome.

My diseases have changed me. I'm not the same person I was when I was first diagnosed and I don't just mean that in the physical sense. In some ways I'm stronger because I've overcome so much and I'm going to continue fighting. But I also feel like I've aged and I'm tired of all the changes it's brought upon me.

They say change is good, but I don't think they were referring to the type of changes caused by autoimmune diseases.

Arlene Grau lives in southern California with her family. Arlene suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.