Graves Eye Disease and Hyperthyroid

Don't Put Off to Tomorrow What You Can Do Today"

"Don't Put Off to Tomorrow What You Can Do Today"

That was the theme of a recent interview I did with Health Writer Stacey Thureen of the Examiner.com.  In an article published yesterday, she highlighted National Women's Health Week to raise awareness of the importance of early diagnosis of health issues.  I was honored by being asked to provide a patient's perspective for her article.

During the interview, I related several aspects of my own personal experience.  I waited longer than I should have to see my doctor, and by the time I was diagnosed my symptoms were advanced.  I talked about the benefit of opening up and talking with others about your illness, and what you're going through.  I also talked about the importance of a good patient - doctor relationship, the importance of documenting your family's autoimmune disease history, and recognizing that you are not alone in your disease (although at times it can feel like it) and support groups can be a big help. 

Here's an excerpt of the article: 

"I found it to be difficult to make a decision about which treatment was best for me unless I knew the options," shared Pesonen.  "This allowed me to be part of the process and not someone who told me what to do.  That's where the Graves Disease and Thyroid Foundation came in.  I've been to several of their support groups.  I've found my experience of talking to people with this disease as very valuable.  There's no cure, and I think that is what sets autoimmune diseases apart from other diseases." 

Click here to read the entire article by Stacey Thureen at Examiner.com

2012 "Greater than Graves" charitable bike ride across the US is about to get underway!

Last November, while attending the Graves Disease and Thyroid Foundation's annual patient and family forum in Boston, I met a remarkable young woman named Michaela Cui, a Graves' Disease patient.  She spoke about her experience with Graves' Disease and her desire to do something to increase awareness and understanding of this disease.  What did she do?  Not just anything.  She planned, organized and participated in the very first Greater than Graves' 3,000 mile bike ride for charity.  That's right, a 3,000 mile bike ride.

On May 26th of this year, a team of riders will once again take to the road, this time on a 59 day, 4080 mile bicycle trip from Cape Code, Massachusetts to San Francisco, California supporting the 2nd annual Greater than Graves ride.  All funds raised for this event will benefit the Graves' Disease and Thyroid Foundation (www.gdatf.org), a 501(c)3 non profit organization.  For more than 22 years, the GDATF has been a leading source of help and hope for those diagnosed with Graves' Disease, including me.

This is quite an ambitions undertaking, and these riders need your support to help accomplish their goal.  If you'd like to learn more about this event, click here to go to the Greater than Graves web site.  Here you'll meet this year's riders, see their planned coast-to-coast ride, and learn more about Michaela's personal story with Graves' Disease.  

Want to ride along?  Or show your support to the riders along the way?  Check out the event schedule at the above web site to see when the team will be passing through your area.  I did and it looks like they're going to be coming right through my area.

Any donation will be greatly appreciated, large or small.  Also, you can contact the team directly if you know of anyone interested in corporate sponsorships as well.  To make a donation, or to learn more, please click here to go to the Greater than Graves' web site.

Let's wish this year's team of riders the best of luck, and safe riding!

 

 

 

Linking Together For A Cure: Raising awareness of autoimmune diseases and needed research

 

Dear friends and readers:

I'm helping support autoimmune disease awareness and research by participating in a charity walk.  If you've visited my blog before, you know that not only am I a Graves' Disease patient, but I'm also a board member of the non-profit American Autoimmune Related Diseases Association, aka AARDA, a 501(c)3 organization.  This year, we're combining our annual awareness and fundraising efforts into our first-ever autoimmune disease walks.  The inaugural three include in Washington D.C., Evanston, IL, and Manhattan, NYC.  So if you live in one of those areas you can walk in person.  Some of us are walking "virtually" until more locations are added.  

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Click here to learn more and help me reach my goal of $1000

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Autoimmune diseases are a broad category of related disease in which your own immune system attacks it's own cells, organs, tissues.  Just like in Graves' Disease where the thyroid gland is attacked causing it to produce too much hormone.  There are over 50 million people in the US alone who have an autoimmune disease, of which there are over 100, and the rates of increase across the world are staggering. And autoimmune diseases affect more women than men, and they tend to cluster in families.  Plus, many people suffer from more than one autoimmune disease.  Most of all, autoimmune diseases are a major cause of chronic illness, and there are no cures.  That's why additional research is so necessary.  And that's where you can help.  Can you donate and help in some small way?

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Your contribution is tax deductible.  AARDA's tax id # is 38-3027574.  When you donate, you'll receive a receipt for tax purposes.  All funds will be used by AARDA to fund autoimmune disease research.  

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AARDA's mission is to ultimately be able to predict who is likely to get an autoimmune disease, then to be able to prevent it altogether.  But first, more research is needed to understand underlying autoimmune disease causes.  

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To say that my illness has been a life-altering experience is an understatement.  While today I feel good nearly every day, it wasn't the case for the first few years after diagnosis when I felt like it was a struggle to make it through each day, let alone go to work and be productive.  That's not to say that I don't still have issues.  I do.  But for patients like me, and likely you, it's frustrating to still not know exactly why I wound up with Graves' Disease.  That's why I'm so passionate about volunteering time to help create awareness of autoimmune diseases, and the needed research to better understand them.  That's why I'm participating in the charity walk.  Every last dollar counts.  And the life we help just might be yours or a family member's one day.  

 

My interview with Dr. Yehuda Handelsman

January is thyroid awareness month and the  American Associan of Clinical Endocrinologists (AACE) is raising awareness of thyroid diseases by promoting a new blue paisley "awareness ribbon" that  you can find at the above link.  You can get your ribbon at the above link.  I've even changed my profile picture on social networking sites to show my support of increasing awareness during Thyroid Awareness Month.  I encourage you to do the same!

As part of this awareness campaign, I was asked by the AACE to participate in a one-on-one interview with Dr. Yehuda Handelsman, endocrinologist and leading expert in the field of Diabetes, Lipid Disorders, Hypertension and Metabolic Disorders.  It was an privelege to be able to ask him specific questions about thyroid disease. 

You can listen to the interview right here.  Topics include TSH testing, early/better diagnostics, thyroid and pregnancy, inherited thyroid disease, predicting thyroid disease through genetics, antibodies (and thyroid function) and more.

 

For more information, please visit thyroidawareness.com

 

Your input matters, take part in AARDA's strategic planning survey

Hi everyone.  As a board member of American Autoimmune Related Diseases Association* (AARDA), a national non-profit based in southeast Michigan, I'm helping to create awareness of a public survey that is in place to gather feedback in guiding AARDA's priorities in programs, services and research for the next five years.  

Autoimmune diseases affect people all across the world, with over 50 million Ammericans alone living with an autoimmune disease.  There are over 100 autoimmune diseases, including Graves' Disease which I have, plus others that are more common like Celiac, Rheumatoid arthritis, Lupus, MS, Scleroderma, Psoriasis, Alopecia, Vitiligo and more.

Please take this opportunity to provide your input.  Every voice counts.

Take the AARDA survey now by clicking here.

 

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And to learn more about AARDA and to go directly to this site, click here.