16 August 2010 ~ 10 Comments

What does awareness mean to me (an article in honor of National Autoimmune Diseases Awareness Month – March 2010)?

For me awareness is about taking responsibility for our own lives. But when it comes to certain specialized topics, it’s simply not possible to know as much as we need to sometimes. I consider myself to be a pretty observant person and because my job involves tons of research, I also read a lot. However, I – like so many among us – couldn’t even locate the thyroid before I was diagnosed with Hashimoto’s. Why is this? It seems that society tends to focus on other more “newsworthy” diseases such as diabetes or heart disease and yet both of these can actually be caused by malfunctioning of the thyroid.

It’s also important to note that both Hashimoto’s (an underactive thyroid) and Graves’ disease (an overactive thyroid) are autoimmune diseases. This means that the body is attacking itself with its own antibodies, treating the thyroid or another organ as if it were a foreigner in its own host or an unwelcome stranger. And when we come to the topic of autoimmune disease, it’s important to know that autoimmune diseases have the pesky propensity to gang up on you and often come together. This is why several thyroid sufferers complain of accompanying diseases such as Raynaud’s phenomenon, celiac disease, Sjögren’s syndrome, lupus and diabetes. And, of course, there are many others. I’m currently reading Mary Shomon’s book on precisely this topic so that I can find out more about them.

Since my diagnosis I have found myself developing a passion for raising awareness for this “ugly step-child” of diseases and I have also found that my passion has positively infected others who have told me how they have started telling more people about the disease. It’s like a game of dominos really – we just have to topple the first one to start spreading the word. In my case, I was particularly inspired by my fiancé’s late mother-in-law. I only ever knew her when she had cancer, but she was an incredibly strong woman. She was unbelievably stubborn, proud and aware and refused to admit weakness even shortly before she died. In the last few days, we saw her deteriorate, but what always struck me about Gayle Fischer was the way she took charge of her own illness, did the research she needed and insisted that the doctors listen to her. Both her sons suffer from chronic illness and we are working on getting them as well as possible, but I am spurred on by the inspiration that she endowed in me.

What are your experiences with autoimmune disease? Do you have any autoimmune diseases other than thyroid disease and what are your suggestions for raising awareness?

Looking forward to hearing from you!

Love,

Sarah

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