About Autoimmune Disease, Advocate, autoimmune 101

Someone Needs To Clean Up This Autoimmune Mess

The autoimmune disease community is 9-50 million people and counting.  Well, as far as we can figure out because we really don’t know for sure.  It’s our best guess because no one knows the precise numbers.  The American Cancer Society can give you the exact number of malignant cancers diagnosed each year.

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The problem is autoimmune disease has not been properly classified as a  singular category of illness.  Instead of looking at autoimmunology as a category of disease, we look at the body part the immune system attacks as the category.  Just look at the multitude of specialists that treat autoimmune diseases.

  • Nephrologist. A doctor who treats kidney problems, such as inflamed kidneys caused by lupus. Kidneys are organs that clean the blood and produce urine.
  • Rheumatologist. A doctor who treats arthritis and other rheumatic diseases, such as scleroderma and lupus.
  • Endocrinologist. A doctor who treats gland and hormone problems, such as diabetes and thyroid disease.
  • Neurologist. A doctor who treats nerve problems, such as multiple sclerosis and myasthenia gravis.
  • Hematologist. A doctor who treats diseases that affect blood, such as some forms of anemia.
  • Gastroenterologist. A doctor who treats problems with the digestive system, such as inflammatory bowel disease.
  • Dermatologist. A doctor who treats diseases that affect the skin, hair, and nails, such as psoriasis and lupus.
  • Physical therapist. A health care worker who uses proper types of physical activity to help patients with stiffness, weakness, and restricted body movement.
  • Occupational therapist. A health care worker who can find ways to make activities of daily living easier for you, despite your pain and other health problems. This could be teaching you new ways of doing things or how to use special devices. Or suggesting changes to make in your home or workplace.
  • Speech therapist. A health care worker who can help people with speech problems from illness such as multiple sclerosis.
  • Audiologist. A health care worker who can help people with hearing problems, including inner ear damage from autoimmune diseases.
  • Vocational therapist. A health care worker who offers job training for people who cannot do their current jobs because of their illness or other health problems. You can find this type of person through both public and private agencies.  Found here

We send Grave’s disease patients to endocrinologists, Crohn’s patients to gastroenterologists, and systemic patients everywhere because we don’t know what else to do with them.  The average autoimmune patient sees six doctors before getting a diagnosis and afterward have four doctors treating them.  It takes ten physicians to achieve proper care for an autoimmune disease!  

It makes sense that a thyroid doctor should treat thyroid problems. However, the problem is not the patients thyroid it is the patient’s immune system which is attacking the thyroid. We can treat the thyroid till kingdom come and it would be like putting a band-aid on a stab wound because the thyroid is only malfunctioning because the immune system is attacking it.  Throwing an immuno-suppressant at a patient does not qualify as treating the immune system either.  Suppressing the immune system brings up an entirely different articles worth of problems and does not address the fundamental need for correction required.

Is it any wonder that autoimmune disease is not making much progress towards a cure?

Since physicians aren’t trained to recognize autoimmune disease as a singular category of disease, and only learn to treat individual symptoms or areas the disease affects, the patient suffers.  Doctors are not strongly delivering the message, you don’t just have rheumatoid arthritis, you have an autoimmune disease. 

The medical community says to autoimmune disease sufferers you’re sick this way and you’re sick that way, but really, we’re all sick one way.  We all have faulty immune systems and that one way should be looked at as an individual category of disease.

The medical field hasn’t kept up with the epidemic of autoimmune diseases ,therefore it hasn’t become adequately equipped with a field of discipline that addresses the disease.

They have continued to lump each symptom caused by the disease into comfortable boxes that have been preassembled to fit other specialities.  Autoimmune disease needs its own custom fitted box.  Yet the medical field has continued to use the same framework of its existing disciplines to treat a new rubric of medical need.

Because it doesn’t fit into current specialties, autoimmunity is often overlooked, undiagnosed or underdiagnosed. Diagnoses and proper treatment are missed because interdisciplinary training has not occurred and they are not adequately trained to think outside their pre-fitted box.

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Why is there not a category of disease designated to treat autoimmune disorders?  Where are the autoimmunologists that everyday patients can find access to for help?  The few that exist hide out researching in places the average autoimmune patient will never access.

Please don’t misunderstand, data and research are vital to our efforts, but so is having a treatment that reflects the finding of that research. Right now there is an enormous disconnect between what autoimmunologists are saying about the classification of autoimmune diseases and how the other specialists are addressing them.  In 2001, in the Journal of the Americal Medical Association the call was put out for a new specialty in autoimmunology.  Here we are fifteen years later and I still can’t find any sort of personal physician that specializes in autoimmunology.  

No other major illness is looked at like this.  Cancer, when it invades the body and metastasizes, is addressed in the field of oncology because it is recognized that cancer is cancer wherever it happens to form in the body.  There may be specialists in surgeons but overall, oncologists treat cancer wherever it affects the body.

Could you just imagine if 50 years after cancer was discovered they still couldn’t wrap their minds around a collective effort to care for it?  It is preposterous!  Just picture a physician treating breast cancer by sending her to a lactation consultant to help with breast function!  That is ridiculous which is why a field of experts have been developed to specifically address cancer as a disease.  Oncology is the umbrella-like covering for any cancer because common sense tells us it is not a malfunctioning breast that is the problem but cancer.  It offers complete coverage to cancer patients with its inverted triangular configuration of care with oncology as the top tier offering the widest range of information on cancer.  It offers prevalence statistics, research, clinical trials, and includes standards for protocols and procedures that then filter down the triangle into specialized areas of care within.

Autoimmunology could offer the same shelter of care that creates prevalence statistics, research, clinical trials, as well as standards for protocols and procedures that would filter down into areas of specialization.  Instead, specialists all view and treat autoimmune disease through their own practice’s lens leading to a lack of continuity in patient care and progress for the cure of autoimmune diseases as a whole.

I, for one, am disgusted by the lack of interoperability in healthcare regarding autoimmune disease.  The very idea that a patient should have to see multiple physicians that specialize in multiple areas to treat a disease that stems from an area none of them treat is infuriating.

The very idea that a patient should have to see multiple physicians that specialize in multiple areas to treat a disease that stems from an area none of them treat is infuriating.

Flustered secretary

It is archaic to believe that in this age of modern medical miracles we still have people organizing their own medical charts and information between multiple doctors that do not communicate with one another or actually practice in the specific treatment of disease that they are dealing with.  Any honest physician will tell you that cooperation between areas of expertise and physicians has historically been a problem within the medical community.  Politics and egos often make interdisciplinary efforts grind to a halt or at best, slow and difficult.  Where does this leave a patient that doesn’t fit into a specialty?

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Autoimmune disease has become a huge mess.  What was once believed to be a rare and abnormal malfunction of the immune system has grown to be an estimated 9-50 million people strong.  In 1992, there were roughly 67 known autoimmune diseases and another 20 strongly suspected of being autoimmune in nature.  There are now at least 80 and the number is growing with 40 additional diseases suspected of having an autoimmune basis.  It MUST be classified as a specific category of disease with umbrella-like coverage by specialists in autoimmune disease.

Dream with me about the difference it would make to this enormous category of patients if healthcare would classify autoimmune disease as its own category and develop specialists in autoimmunology to treat it.  What would it be like for 9-50 million patients to see a doctor that fully understood the inner workings of autoimmune disease and not just a particular part of what they face?

What if, like oncology, an autoimmune patient could rely on their physician to treat the problem as a whole?  What if your primary care physician could refer you to an autoimmunologist or be referred to a specialist within the covering of autoimmunology? They wouldn’t keep chasing after symptoms like a dog chasing its tail.  They would begin looking at how to heal our immune dysfunctions and develop ways to do more than just offer us a lifetime of debilitating drugs to suppress it and vainly attempt at controlling our pain.

The problem is bigger than just meeting an unmet need here.  It twists and turns deep into the recesses of politics and pockets.  In order for the discipline of autoimmunology to develop it needs data, support, and money.

It’s not enough for everyone to blog and tweet about how unfair things are when you deal with looking for a diagnosis and treatment. It’s only other people who feel the same way because misery loves company.  What we need is to take the autoimmune mess community and collectively work towards change.

We need to unite 80+ diseases in the name of 1 cure.  If you cure one type of cancer you cure them all, the same is true for autoimmune disease.

Together we are stronger and louder.

Together we cannot be ignored.

We win TOGETHER!

 

Join the movement and share the message.

80+ autoimmune diseases, 1 cure.  #unitethefight #autoimmunity

My sources and more information:

http://magazine.uclahealth.org/body.cfm?id=6&action=detail&ref=1048

http://news.rutgers.edu/feature/when-health-disciplines-work-together-better-outcomes-fewer-doctor-visits-result/20160128#.Vsdc6ZMrJ7o

http://www.aarda.org/autoimmune-information/list-of-diseases/

https://www.nlm.nih.gov/medlineplus/ency/article/000816.htm

 

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3 thoughts on “Someone Needs To Clean Up This Autoimmune Mess”

  1. I agree with you 150%. I see several doctors to treat Still’s Disease. Unfortunately, it is a rare autoimmune disease to top it off so issue with working with several doctors is even more difficult due to their lack of knowledge about the disease. A new specialty is long overdue!!!

    Liked by 1 person

    1. I just had an issue this week where my gastroenterologist put me through something my rheumatologist would have told him to choose an easier alternative. It’s frustrating, and at the end of the day the only one sitting there with her head hanging onto a toilet bowl all night was me. I’m assuming both doctors had a good nights sleep while I tried to recover. There is so much work to be done in the field of autoimmunity. It is alarming at how the lack of knowledge the people we think know everything have. We have to bring all of these smaller autoimmune diseases together along with the big guys like psoriasis and ra to get our voices loud enough to be heard as we demand change.

      I’m so sorry to hear about your struggles Kareema. I hope you find some comfort and camaraderie here with us at autoimmune mess! Best wishes and I thought I would share another great blog that might help your journey as well. http://www.notstandingstillsdisease.com We are all in this together!

      Like

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