Advice for Autoimmune Moms + Research Update from the Johns Hopkins Autoimmune Disease Research Center

Johns Hopkins UniversityIn my autoimmune research over the years, I’ve come across Dr. Noel Rose’s name many times.  Dr. Rose is a MD and PhD, and the Director of the Johns Hopkins Autoimmune Disease Research Center.  When I reached out to him to ask for an interview, he responded immediately, and we had what I hope will be the first of many conversations about autoimmune research in November, 2013.

Our first talk centered around current progress on autoimmune research at Johns Hopkins and in general.  The complexity of studying the progression and causation of autoimmune disease is an enormous challenge.  While there are many more findings to be uncovered, I sleep better at night knowing Dr. Rose and his team are making progress that will surely help my children and grandchildren.

Knowing the goals of the Autoimmune Disease Research Center are to “understand the etiology and pathology of autoimmune disease by studying both human patients and experimental animals,” how close are you to those goals?

“We’ve made enormous progress, but like everything else in science, there’s no endpoint,” says Dr. Rose.  Autoimmune disease research has been a “very neglected area” because most of the research looks at individual diseases.  The Johns Hopkins Autoimmune Disease Research Center teams up scientists from different specialties to compare notes and concentrate their research on the common features of the diseases that occur in different parts of the body and organ systems – this is the philosophy of the center, says Dr. Rose.

How does the autoimmune research going on right now help patients?

“We know a lot about the pathology and  the mechanisms of the disease, but it’s hard to go back in time and decide on the cause.  But as we look at all autoimmune diseases together, we see more common features,” says Dr. Rose.  New biopharmaceuticals that are developed for one autoimmune disease  can sometimes be in patients with other autoimmune diseases.  For example, TNF inhibitors that are useful for arthritis patients can be used (with great caution) for patients with IBD ( inflammatory bowel syndrome).

We are finding  that all of the autoimmune diseases depend to some extent on multiple genes, not a single gene trait.  These genes are common to different forms of autoimmune disease.  So the more genes that one inherits that enhance susceptibility, the more chance one will get one or more autoimmune diseases, Dr. Rose says.  Once a person has one autoimmune disease, there is 10-25% chance s/he will develop another one. It is important for that patient’s doctor to be aware of the increased risk, he says.

At the time of diagnosis, why are some patients not educated that their disease is autoimmune in nature and the implications for what’s happening throughout their body, not just in the part under attack?

Dr. Rose says that some older physicians who went through medical school decades ago — before autoimmune disease was more common — don’t understand the concept that all autoimmune diseases are related, and that a patient with one autoimmune disease has an increased susceptibility for others.  That said, doctors go to meetings and get updates, talk to other doctors, and more and more should know about the link.

Dr. Rose’s other good recommendation is for autoimmune patients to get a very good general physician “who looks after them and refers them to specialists.”  It’s bad for patients to be treated separately without anyone coordinating their medical care.  So he says, “the first thought after a diagnosis is to get a good general internist and not a specialist, and let him/her be the navigator of their health.”

A common mistake is that patients don’t have someone looking at their whole body, treating the whole patient and all systems in the body.  The rule should be: “first general internists, and then specialists,” he says.

What advice do you have for moms worried about their children propensity for an autoimmune disease onset?

Dr. Rose says to be sure to share your own health information with your children’s pediatrician.  He/she will be most familiar with the children’s health through the years and can be sensitive to the autoimmune risk.

Since the pediatrician will see a child/children over time, they will have a baseline.  A specialist who doesn’t have the history on you/your kids and your respective health issues will have a harder time getting to a diagnosis.

Is autoimmune disease at epidemic levels?

The number of people diagnosed with an autoimmune disease, over 20 million in the US, make it very prevalent, but not an epidemic. For reference, there are about the same number of people with heart disease and the numbers are twice that of those with cancer.  Although autoimmune incidence has been increasing gradually in the last few decades, it doesn’t come  as a very sudden increase in numbers, which is what meets the definition of an epidemic, says Dr. Rose.

As for why the numbers have been increasing over the last few decades, Dr. Rose says there are two pieces to the puzzle.

First piece of the puzzle — is there more disease, or just better diagnosis?  Some studies have looked at this, mostly in Scandinavian countries where they follow children through adulthood (though their health systems) and see what happens to their health.  In those studies, there has been a real increase in the number of people with autoimmune disease that is not explained by population increases or better diagnostic capabilities  or increased awareness.  There are just more cases, period – but it is “not a uniform picture” , says Dr. Rose, because type 1 diabetes, MS, Graves’ and lupus are increasing, but rheumatoid arthritis is not.

Second  piece of the puzzle – why are there more people with autoimmune disease today than there were 50 years ago?  Dr. Rose says that it’s too short a period for genetics to be a plausible reason, so they assume it is something in the way of an exposure or multiple exposures.

The studies that try to correlate (note this is not the same as causation) the exposure with an outcome of an autoimmune conditions are expensive because they need to study large groups of individuals over long periods of time, he says.  These are usually done by government agencies such as NIH and CDC in the United States, or the Ministries of Health in Europe.  We are each exposed to hundreds of chemicals each year, so to record an individual’s exposure is a daunting and expensive task.  To help narrow the puzzle, you can group all autoimmune diseases together, but this has a weakness because the different conditions may not be associated with the same kind of exposure, says Dr. Rose.

Part of Dr. Rose’s work has been to look at why autoimmune thyroiditis has been increasing over the last 60 years.  In lab experiments with mice which are highly susceptible to autoimmune thyroiditis, an increase in the amount of iodine in their drinking water is correlated with a higher incidence of autoimmune thyroiditis than in mice which did not have the iodine water.

Note that the researchers know that iodine is not the cause of autoimmune thyroiditis, but its incidence can be augmented by too much iodine in the diet, says Dr. Rose.  This  must be a  balance because we all need a modest amount of iodized salt in our diet, so you don’t want to eliminate the iodized salt altogether.  But most Americans take in 5x more salt than they really need, says Dr. Rose.  Most foods we eat have enough salt, so a good rule of thumb is not to add salt (unless it is a natural salt that doesn’t have iodine), he says.

What does current research show about the role of inflammation with autoimmune disease?

“Usually inflammation is normal,” says Dr. Rose, as it is useful in reducing the spread of infection.  It is  speculation right now that inflammation is aggravating the disease in people who are genetically predisposed to autoimmune conditions.

In studies, mice with too many “bad genes”, inflammation of some types can give rise to an autoimmune disease.  So it may be that inflammation is an added factor in promoting autoimmune disease in those with the high risk genes, he says.   He is trying to understand what kind of inflammation and its mediators,  called  cytokines, can promote autoimmunity in particular people to use that knowledge to intervene so that a patient will not go on to develop an autoimmune disease, says Dr. Rose.  But “inflammation by itself is not a cause of autoimmune disease.”

 

About the Author
Katie Cleary is founder of AutoimmuneMom.com.  She lives with three autoimmune conditions, her husband, kids and mini labradoodle dog in Austin, Texas.

This post contains opinions of the author.  AutoimmuneMom.com is not a medical practice and does not provide medical advice, diagnosis, or treatment.  It is your responsibility to seek diagnosis, treatment, and advice from qualified providers based on your condition and particular circumstances.  Camino Real Ventures, Inc., the company that makes AutoimmuneMom.com available to you, does not endorse nor recommend any products, practices, treatment methods, tests, physicians, service providers, procedures, clinical trials, opinions or information available on this website.  Your use of the website is subject to our Terms of Use and Privacy Policy

Photo credit: http://webapps.jhu.edu/jhuniverse/information_about_hopkins/campuses/east_baltimore/

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