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What Awareness Means To Me, Sarah Downing: National Autoimmune Diseases Awareness Month, March 2010

Post Published: 15 March 2010
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Category: National Autoimmune Diseases Awareness Month March 2010
This post currently has 13 responses. Leave a comment

(Written by Sarah Downing, Hashimoto’s Patient and Editor/Dear Thyroid: Wings of Hope Columnist)

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, Sogren’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 (http://bit.ly/92TjuQ).

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 fiancée 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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13 Responses to “What Awareness Means To Me, Sarah Downing: National Autoimmune Diseases Awareness Month, March 2010”

  1. Jennifer says:

    I don’t think most people understand it so I try and explain it as best I know but as a Hashi’s patient I can honestly say I don’t even know everything about it! I plan to educate myself further and thank you so much Sarah for sharing.

  2. Dear Thyroid says:

    Hi Jennifer;

    Thank you so much for sharing your thoughts. We’re very sorry to hear that you are newly diagnosed with Hashimoto’s. How are you managing and handling everything? We have lots of support and resources that we can offer, as well as point you in the direction of more resources.

    Consider checking out Sarah’s column “Flying with Broken Wings” as a start – http://bit.ly/9ZMkqY. You’ll find some great info.

    Keep us posted and keep writing and talking!

    xo

  3. Jennifer: that’s great that you want to find out more. When you are first diagnosed, it can be a very daunting feeling. Feel free to contact me if you have any questions. Otherwise, there are some great sites out there. I know many people who find http://www.thyroid.about.com to be a very good starting point. As for explaining it to friends and family, my first two columns deal with that quite a bit, so maybe you can find some tips that come in handy.

  4. Anonthp says:

    Sarah,

    Really liked this column! I’ve worked in healthcare for many years, my Mom and sister had thyroid disease, I could tell you where the thyroid was located but I’m ashamed to say that I knew nothing about Hashimoto’s when I was diagnosed. I certainly am not an expert yet but have been trying to educate myself. It’s amazing how many auto-immune diseases that I could find in my Mom’s side of the family and no-one had ever connected the dots. I’ve started to break the cycle by telling my kids about the family history and urging them to be checked.

    Your mother-in-law sounds like a great lady. Thanks for sharing her and your story with us.

  5. AnonTHP, that’s nothing to be ashamed of at all. Knowing where the thyroid is a far cry from knowing what it does, much less what Hashimoto’s is.

    The most important thing is that you got a diagnosis and you’re finding your way. We’re quite proud of you.

    Good for you for educating your family, that’s wonderful! Are they receptive? Autoimmune disease runs in your family; what diseases, if you don’t mind me asking?

    Thanks for sharing more of you with us.

    xo

  6. Social comments and analytics for this post…

    This post was mentioned on Twitter by FavorsbyDorinda: RT @dearthyroid:Oh, if U wouldn’t mind RT’ng “What Awareness Means to Me” series is LIVE http://bit.ly/dhY8aU, please? thx! @katieschwartz…

  7. Miriam says:

    Thanks Sarah, another wonderful article. You always put it in such a way to be able to make us understand what is going on in our bodies.

    Its sad that your fiancée’s late mother passed away, she sounded a wonderful lady and so courageous and a great loss to you both and would have been a great asset in your lives.

    Its so good that we now have the Internet for us to be able to research all there is to know about our Thyroid conditions. I was diagnosed long before the Internet became common place and had to rely on the medical profession to tell me all about the condition. If I had been able to research the condition then, like I can now, then I am sure I would have had the surgery (I had the gland partially removed due to being hyper for those who do not know) a lot sooner than I did and been in better health today as I would have been in more control of my own body. I have learned more in the last few years than I have in all the 32 years since my diagnosis. Even my own doctor says I know as much if more than than she does about Thyroid disease!

    For all you newly diagnosed Thyrellas out there……you do learn to take your medication routinely daily, build your life around your Thyroid condition, and although you will always have up and down days, once controlled, you are able to live a normal life.

    Kick the damn gland, don’t let it control your lives!!

  8. Anonthp – Glad you liked my article – thank you for your comments. Katie is right. No need to be ashamed. Thyroid disease simply isn’t publicised as much as it should be and, unless they have it, most people seem to have no idea what Hashimoto’s is. I’m so glad you’re talking to your children about it – it’s so important for them to know as it is all too often genetic. Thank you for your kind words about my mother-in-law. She was very unique. She wasn’t always the easiest of people to be around because she was very strong-minded, but when it came to her illness that was a good thing. I only wish I could have known her for longer than I did.

  9. Thanks Miriam. I do try to explain medical stuff in a way that someone who is non-medical would understand it. Perhaps it is easier for me as I do not come from the medical profession. On the other hand, this often means doing more research to make sure I get it right.

    I do miss my mother-in-law. I was pretty cut up when she passed and sometimes I think that this and what ensued are what brought my health issues to the fore. I appreciated the way she was very accepting and empathic in some ways, although she could be rather tough on her own sons. My own parents always hounded me about my weight, but she was very encouraging and made me feel normal and attractive.

    You’re so right about the Internet! I hear stories from older translators about the pre-Internet era and I think it must have been tough. This morning I couldn’t have done without it – I was doing a translation on wines/geology and it required a lot of research.

    Such inspiring words, Miriam! We must not let our glands control our lives, but of course this can sometimes be easier said than done. However, it is good to know that thanks to this community we are not alone and can help each with support and advice.

  10. Lolly says:

    Sarah,

    Great Article about awareness.
    So far i have had 3 autoimmune diseases one being life threatening then I went onto to develop GD and GO it’s as if my body was being invaded by an army who wanted to take over but the good guys in there weren’t having it so they reacted the only way they knew how with me being stuck in the middle.

    Who knows if I or any of us will go onto to develop any thing else in our life times but the hardest one for me has been GO and GD which is still ongoing.

    I think spreading the word and making others aware about AI diseases especially GD and hashi’s can only do more good than harm maybe then more people will think about there own health there own life styles.Letting others know that just because you can;t see this disease doesn’t mean it isn’t life threatening or debilitatin.

    Sorry about your MIA she sounded such a strong women right up to the end and passed on something unique to you.

    Lolly

  11. Thank you, Lolly, for your kind comments (including the ones about my mother-in-law). I’m glad you liked my article and from what I know of you you are very into awareness, which can only be applauded. I am sorry that you have to deal with the GD and GO. What’s the other autoimmune disease if you don’t mind me asking? A lot of these diseases seem to be invisible, part of the problem being that there is such a myriad of symptoms that they are hard to diagnose.

  12. Lolly says:

    Well at quite an early age I had endometriosis which has now been linked to autoimmune disease.
    http://www.endo-resolved.com/autoimmune.html

    I ended up having a full hysterectomy and Ooferectomy at 35. Then I went on to get in 2003 antiphospholipid syndrome sometimes known as Hughes Syndrome which causes clots, sticky blood and this is another autoimmune disease. http://www.medicinenet.com/antiphospholipid_syndrome/article.htm

    2 years later Graves disease and TED. I wonder what next my body has install for me nothing will ever surprise me after getting all of these I must be predisposed to AI diseases because no-one as far as I am aware has had any.

    the second one was very serious and had me in Intensive care and in hospital for nearly 2 weeks I have to take medication to keep my blood thin.

  13. Thanks for sharing your experiences, Lolly. I am so sorry you had to go through all that. I definitely knew about the connection between endometriosis and thyroid disease, as my doctor had mentioned something to that effect. Thyroid disease definitely puts us at a higher risk of developing problems or imbalances with or sex hormones, too. I hope your body decides to leave you in peace with additional autoimmune diseases now! Take care! Love, Sarah

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