Indifferentism is the worst kind of disease that can affect people.”
Bhimrao ramji ambedkar, Writings and Speeches: a ready reference manual
March is Autoimmune Disease Awareness Month… I know what you are thinking, its always ‘something’ awareness month, week, or day! In fact , in Canada the government recognizes March as, to name a few, Liver Health Month, Nutrition Month, Pharmacy Awareness Month; this week is Brain Awareness Week and World Glaucoma Week; and today, March 14th is World Kidney Day, (wow, today, I get two for one, AI and kidneys!)
One may well ask, what is the point, with all of the worthy health issues as well as other political, social and commercial issues vying for our attention at the same time?
There just are not enough months, days or weeks in a year to accommodate all of the worthy (and perhaps not so worthy but often times fun) groups that want to raise awareness or celebrate everything from diseases, professions, social attitudes, religious holidays, people, places and things – why, even donuts have their own day! That being said, there is great value in many of these ‘awareness’ campaigns such as Autoimmune Disease Awareness Month (ADAM) which is spearheaded by the American Autoimmune Related Diseases Association, Inc. (AARDA.org) — Here are three reasons: AWARENESS (of course), ADVOCACY, and UNITY.
Autoimmune Disease Awareness
According to the AARDA, less than 13% of Americans can name one autoimmune (AI) disease (www.facebook.com/Autoimmunity March 12, 2019), which is rather surprising considering they also report that 20% of Americans, or 50 million people, suffer from an AI related disease
(www.aarda.org/knowledge-base copyright 2018) It is also surprising because all of my adult life I have been familiar with the term autoimmune disease. This is because my youngest sibling was diagnosed with one, Addison’s Disease, when I was 20 and she was just 11, so by now I just assumed it was common terminology. In my immediate family, another sibling developed Type 1 Diabetes as an adult, and I later with Scleroderma.
A couple of weeks ago I was taking an Uber to Toronto General Hospital for treatment. The driver asked me if I worked there or was a patient. When he learned I was going for treatment he asked if I had cancer; I let him know that I had a rare autoimmune disease. He had never heard of autoimmune diseases, so I explained simply that it is when a person’s immune systems attacks their own body making them ill. He was aghast! He had never heard of such a thing. I told him that he probably knew of quite a few people with autoimmune disorders, such as MS, Rheumatoid Arthritis or Lupus.
Autoimmune diseases are many, the ten most common of which are listed below and also include Crohn’s Disease, Fibromyalgia and Raynaud’s phenomenon. But there are also rarer forms of AI, such as Addison’s Disease, Evans Syndrome and Scleroderma, which before diagnosis most patients and their families have never even heard of. In fact, many doctors and healthcare practitioners may not be fully familiar with them either. My sister was sick for months and came within a day of dying, until she was transferred from our local hospital to Toronto’s Hospital for Sick Children (“Sick Kids”) and was at last correctly diagnosed with Addison’s Disease. When I was admitted to hospital with Scleroderma renal failure and cardiac involvement I was also suffering from an extended and painful flare of Raynaud’s. In spite of this I was placed in a ward bed next to a window. It was winter and between the Raynaud’s and my anemia I was freezing and shivering all of the time. When placed by the window I immediately asked to be moved to an interior bed. I was promised as soon as one became available I would be moved. In spite of my pleas, it took more than two weeks to be moved to an interior bed because my nursing care team while in many ways excellent seemed unaware of the damage that secondary Raynaud’s can do to the skin and blood vessels.
10 Most Common Autoimmune Diseases*
- Graves Disease
- Rheumatoid Arthritis
- Hashimoto’s Disease
- Type 1 Diabetes
- Pernicious Anemia
- Multiple Sclerosis
- Systemic Lupus
- Sjogren’s Syndrome *AARDA, http://www.adammonth.com, copyright 2019
It is important that we become aware of the term ‘Autoimmune Disease’ because AIs are complex and difficult to diagnose. I have often heard that on average it takes more than 2 years to receive a diagnosis of Scleroderma, with patients undergoing many tests and specialist visits before they can be treated. Further, these diseases tend to cluster in families, like it did in my immediate family, and 75% are women (AARDA, 5 Facts Everyone Should Know About Autoimmune Disease, adammonth.com, copyright 2019). With greater awareness among healthcare practitioners and the general population the time to diagnosis might be sped-up considerably. This would make diagnosis less stressful for the already suffering patient and likely save the healthcare system considerably by reducing the cost and wait times for unnecessary specialist visits and diagnostic testing. Early-intervention, of course, while not only providing earlier relief can often greatly benefit outcomes as well.
According to Wikipedia, “Advocacy is an activity by an individual or group that aims to influence decisions within political, economic, and social systems and institutions” (https://en.wikipedia.org/wiki/Advocacy). Advocacy is closely tied to Awareness, in as much as it is advocacy that can help bring awareness about AI diseases. But more than that, it can bring to bear the social, academic and political will required to find treatments and cures. AI patients make excellent advocates, but when they are ill, they cannot do it alone. Support is required from caring friends and family, healthcare practitioners and researchers, and community and political advocates to raise private and public research dollars to find connections, treatments and cures of and between autoimmune related diseases.
Many of the most common AI diseases have strong advocates and lobbyists. For those with very rare forms of AI disease, however, there is far less support and research. I often compare my experience in the kidney and scleroderma clinics, both of which I have spent quite a bit of time over the past 20 months or so. At the scleroderma clinic I visit a doctor who gives me an exam and prescribes medications. At the kidney clinic, not only do I have a doctor, but a designated Registered Nurse whom I may contact at any time with questions or problems, I have a dietitian, a pharmacist, and a social worker. I was supplied with binders of information about kidney disease and care, grant applications were completed for me, and much more. Why? Because there are a lot more patients with kidney failure then there are with Scleroderma, therefore, more money and resources are pooled together for kidney patients. This is fantastic for the kidney patient and I have been deeply appreciative, but what about the patient with Scleroderma or another rare disease?
Let us consider these statistics… the number of patients who suffer from autoimmune disease, as AARDA reports, is 50 million people in the U.S. versus 30 million people in the U.S. with Chronic Kidney Disease (CKD) as reported by the National Kidney Foundation, (About Chronic Kidney Disease, http://www.kidney.org, copyright 2017). Imagine the possibilities if resources were pooled for those with AI rather than fragmented as they currently seem to be? How much stronger would the AI lobby be? How many more resources could be brought to bear for those with AI if funding for research and clinics were more unified?
But there is another type of unity that Autoimmune Disease Awareness Month could also facilitate. Most AI diseases are chronic, many without highly effective treatments or cures. Chronic illness, pain and/or fatigue is extremely isolating. Many AI diseases can also be disfiguring and debilitating contributing to an even greater sense of isolation and hopelessness. Being the only person you may ever know with your disease, particularly where there are no specific clinics or support groups available for your specific form of AI can be even more isolating. Raising awareness about AI, and joining those diagnosed with AI diseases in their many forms (both common and uncommon) under one umbrella might begin to alleviate this isolation.
Don’t be indifferent… Even if for just a month, through awareness events, conventional and online/social media, we could become united; one advocacy group, one hashtag, one family! Increasing awareness and advocacy activities for AI, thereby strengthening bonds and relieving isolation, we can bring a sense of community, resources, and hope to those who are in great need of it.
Canadian Readers: Help Put Autoimmune Disease on the Health Canada Calendar for March 2019 and beyond
Canadians, including the millions of us suffering from over 100 autoimmune diseases, let’s make sure that Autoimmune Disease Awareness Day “ADAM” is on the government of Canada’s Calendar of Health Promotion Days during the month of March going forward. Here are a few easy ways you can be an AI advocate:
- Email your local Member of Parliament and Federal Minister of Health
- If you are not sure who your MP or Federal Minister of Health is, try using this link: http://www.ourcommons.ca/Parliamentarians/en/constituencies/FindMP
- Submit a request on the Government of Canada’s website https://www.canada.ca/en/health-canada/corporate/contact-us/events-calendar.html
- Familiarize yourself with basic information at http://www.adammonth.com
- For English title: Autoimmune Disease Awareness Month
- For French title: Mois de Sensibilisation aux Maladies Auto-Immunes (if you have a better translation, please let us know in the comment box below)
- The contact email for AARDA is email@example.com
- In the additional information area mention that you are NOT a representative of AARDA but you are advocating to raise awareness on behalf of the millions of Canadians with Autoimmune Diseases to have this day recognized as an International Health Awareness Day
- On social media, discuss Autoimmune Disease Awareness Month, search and use the hashtag #ADAM19 and @ your local MP and/or the Federal Health Minister
End Indifference, Advocacy can be easy! AARDA.org asks that we change our social media profile pic for ADAM19