More awareness is never a bad thing.

Today is World Lupus Awareness Day. I sometimes wonder if the proliferation of awareness days, weeks and months desensitize us, making us immune (no pun intended) to the message we are intended to receive.

While visiting last weekend, my mother saw tv sports commentators wearing green ribbons. She asked why they were wearing green ribbons? I replied for the Humboldt Bronchos hockey team. She knew that had been done, but was surprised they were still wearing those weeks after the accident. Having celiac disease, she commented that green ribbons are also worn for celiac awareness. I added my two cents: green is also for organ transplant awareness too. We are running out of colors, sadly not out of diseases or causes.

Since starting my blog, I’ve had the same thought while composing every post about Sjogren’s’s Syndrome – everyone who reads my blog knows about this already. But thanks to the world wide web, new readers continue to find me here and inevitably after each post a new reader e-mails me, or leaves a comment after a post saying they never heard of Sjogren’s before. Sometimes people thank me, because they have Sjogren’s themselves, or know someone who has it, or suspect that someone they know and love is suffering the symptoms but has yet been diagnosed. I am willing to gamble on reader fatigue if it means one more person in the world will become aware.

Beyond awareness, I hope my writing will also generate understanding. Awareness that a certain disease or cause exists is absolutely the first step. It is great to know today all over the world people will wear purple ribbons acknowledging it is World Lupus Day. I hope people ask the person wearing a ribbon why they are doing so; that they get a response creating an understanding of Lupus and its impact on the person wearing it, whether they are afflicted or wearing the ribbon for someone they know.

Several years ago my Rheumatologist believed I had Lupus, but as my symptoms evolved and blood tests were repeated over and over through the years, I was diagnosed with Sjogren’s Syndrome, Raynaud’s Syndrome, Autoimmune Hepatitis, and Undifferentiated Connective Tissue Disease (UCTD) “with multiple symptoms of Lupus and Dermatomyositis” instead.

LUPUS overlap diseases

Although I meet the criteria for Lupus based on the characteristics used for diagnosis, because it has not affected my brain, lungs, heart or kidneys, and I have not tested positive for the definitive antibodies anti-DNA, rather only the more general ANA, my current Rheumatologist does not want to say I have Lupus. Instead I was diagnosed with UCTD, which is basically a catch-all disease category (hence the word undifferentiated) for people with symptoms of several connective tissue autoimmune diseases including Lupus.

To do my part on World Lupus Awareness Day here are the diagnostic criteria for Lupus as per the Canadian and American Rheumatology and Lupus Associations. A person must have at least four of the eleven criteria on the list. If you currently have four or more of these, or have had in the past, there is a strong chance you have Lupus.

1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
2. Discoid rash – a rash that appears as red, raised, disk-shaped patches
3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
4. Oral ulcers – sores appearing in the mouth
5. Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
7. Kidney disorder – persistent protein or cellular casts in the urine
8. Neurological disorder – seizures or psychosis
9. Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
10. Immunologic disorder –anti-DNA or anti-Sm or positive antiphospholipid antibodies
11. Abnormal antinuclear antibody (ANA)

(In case you are curious, # 1, 3, 4, 6, 9, and 11 have applied to me. Because I am currently taking a chemotherapy immune-suppressant drug for the AI Hepatitis, most of those symptoms have been lessened by the same drug, which is a very good thing.)

Remember if you see someone wearing a purple ribbon today, maybe take a moment to acknowledge it. Be aware and even better, try to understand the complexity of Lupus.
It is not an easy disease to diagnose; it is just as difficult to live with. Be patient, be kind.

Sjogren’s Awareness: Oh how I wish I was oblivious!

April is Sjogren’s Syndrome awareness month. As a fellow sufferer said yesterday – it is no April Fool’s joke. In an effort to help educate others about Sjogren’s I will blog some of my journey with this illness throughout the month.

Today on my personal Facebook page, I was asked by a friend how long ago I was diagnosed, and if Sjogren’s was “progressive”.

IMG_1403

I was “officially” diagnosed with Sjogren’s in 2002 (based on positive blood work for 3 different antibodies as well as obvious physical symptoms), however I know that I had it long before then. Significant symptoms began about 12 yrs prior, and lesser symptoms even earlier (as a child/ teen).

After the Sjogren’s diagnosis the docs thought I had Lupus as well, as I met several of the diagnostic criteria for Lupus especially due to sun-related symptoms, including at times the tell-tale malar (butterfly shape rash) on face. Then later, they decided I didn’t have it because I had not developed any signs of “organ involvement” (lungs, kidney, brain most typical organ manifestations with Lupus).

Next they thought I also had Dermatomyositis (another AI disease with specific types of skin and muscle manifestations) due to a very particular type of rash I developed on my hands, Gottron’s Sign, specific to that autoimmune disease. This was diagnosed by a Dermatologist who specializes in skin manifestations of AI diseases.

Eventually they decided I had Undifferentiated Connective Tissue Disease which basically means I have symptoms of both Lupus and Dermatomyositis but not, as they say, “full-blown” disease. Also related to the above I have Raynaud’s Syndrome, and previous episodes of Vasculitis.

Then the most significant event in my medical journey thus far was in May 2009. I was diagnosed with Autoimmune Hepatitis; my immune system attacked and damaged my liver. Hepatitis just means liver inflammation, my illness is not contagious, nor contractible like other “hepatitis”. Quite simply, my body began attacking my liver for no good reason at all.

Immediately after liver biopsy the gold standard to confirm the diagnosis, I began aggressive treatment including initial high dose, then long term steroids – Prednisone, followed by a chemotherapy immune-suppressant drug which I have to be on for the rest of my life, which hopefully as long as I take it and it continues to work, will keep me in a sort of remission.

Additional liver biopsies have confirmed my liver health is not as compromised as it was in 2009. BUT the immune-suppressant drug I take to keep my liver happy has significant side effects including small daily ones like digestive system upset (vomiting / diarrhea/ nausea) ranging to increased risk of cancer especially of lymphomas, and skin cancers. Apparently approximately less than 5% of Sjogren’s patients get AI Hepatitis. I often wonder why I could not be in the small percentage of people who win the lottery instead.

There are some people who only get what are described as the hallmark symptoms of Sjogren’s – dry eye and dry mouth. Too many of us get multiple, systemic symptoms. In speaking to many other Sjogren’s patients it also seems that once you are diagnosed with one AI connective tissue disease you begin to collect others, a domino effect. Over the previous few years I have suspected that I have thyroid and neurological issues developing or undiagnosed which remain under investigation.

Is Sjogren’s progressive? No, not in the sense of diseases such as ALS, which continually ravage the body destroying function to a greater and greater extent leading to inevitable death from that disease specifically. Sjogren’s is however, potentially life-threatening when patients experience organ involvement such as AI Hepatitis or other serious complications. Sjogren’s patients are at 44x greater risk for certain lymphomas. The drug I need to be on for my liver also has increased risk of lymphoma as a side effect. Does this mean I will get lymphoma? No, but I do feel like am rolling the dice. Based on my lotto winnings, I am not often a lucky gambler. Fingers crossed, hoping for better luck this time!

For more info on Sjogren’s: http://www.sjogrens.org