ALS Association

Sunday Morning Inspiration

You may be familiar with the popular Sunday morning TV show on CBS, Sunday Morning.  Today’s show was quite inspirational.  The theme was about exceptional people coping with physical and emotional barriers.  I was touched by the piece on Proving the Butterfly Effect with a Single Act of Kindness featuring Chris Rosati.  Here’s an excerpt:

The butterfly effect is this idea that a single butterfly flapping its wings on one side of the globe can, in theory, start a hurricane on the other. It’s a physics concept, but Rosati wondered if it could be applied to kindness as well.

“An act of kindness, how far could it go?” he wondered.

Check out Chris’s story and follow his Twitter accounts (Inspire MEdia @IMN_Tweets and @bcrosati ).  Chris touched my heart with his bravery and compassion while living with Amyotrophic lateral sclerosis (ALS).  Looking for some hope?  Need some encouragement while struggling with your personal chronic illness journey or assisting others with their personal crisis?  Take a look at Chris Rosati’s story and be inspired.  I admire you, Chris.  Thank you for sharing Chris’s story, CBS.

Namaste,

Mags

Autoimmune hepatitis is a chronic disease of the liver.

Autoimmune Hepatitis Research Network

There’s been a recent development at Indiana University in the Division of Gastroenterology/Hepatology – the Autoimmune Hepatitis Research Network (AHRN).  It’s a one-stop-shop for finding autoimmune hepatitis (AIH) medical news.  AHRN provides resources for learning about AIH treatment and AIH research.  Do you want to participate in AIH patient surveys, conferences, and support groups?  AHRN is gathering AIH patient feedback and provides weblinks to patient/feedback surveys.  When I was newly diagnosed with AIH, I spent countless hours on the Internet, searching for any AIH news.  It was often a fruitless, frustrating effort to find recent medical news about autoimmune hepatitis (AIH), a rare form of liver disease and an autoimmune disease.

I created this blog to track AIH news and medical resources for newly diagnosed AIH patients, like me, searching for any AIH news to learn more about learning to live with AIH.  Check out Indiana University’s AHRN resources.  AHRN provides links to many of my favorite support organizations including the American Liver Foundation, the American Association for the Study of Liver Disease, and the National Digestive Disease Information Clearinghouse.

AHRN provides physician contact information, telephone numbers, and an open invitation to AIH patients, careproviders, and other AIH support people to participate in this current AIH study.  It is encouraging to see AIH in the news with current research being conducted to study AIH and provide a learning opportunity for AIH patients.  AHRN is a message of hope for AIH patients who need an outlet for giving feedback to the medical community about AIH treatment protocols, AIH symptoms, and the various ways AIH impacts patients on an individual basis.  AIH unites us as a community, but our AIH journeys are different in many ways.  Kudos to Indiana University for keeping AIH in the news and providing valuable AIH resources and research!

Namaste,

Mags

October Liver Cancer Awareness Month

October – Liver Cancer Awareness Month

Learning to live with a chronic, rare disease is a daily process.  Thankfully, I can rely on the American Liver Foundation to keep me updated with medical news concerning liver diseases, particularly autoimmune hepatitis (AIH).  October is liver cancer awareness month.  For those of us living with liver disease, it’s good to track current medical news, particularly as it pertains to our own chronic diseases.  You never know when you might need this information or who in your support circle might need new medical information, too.

How do I learn about new medical updates pertaining to liver disease?  I follow the American Liver Foundation (ALF) via the ALF Twitter social media account (@liverUSA), the ALF website, and several ALF Facebook community pages.  It’s a fun way to get snippets of timely, news information throughout the day.  If you haven’t begun following these social media sites, I suggest you begin, NOW.  Social media sites can be a great way to stay connected and feel supported in time of medical crisis.  Many chronic diseases can make us feel isolated and disconnected from mainstream society for many reasons.  It times of autoimmune flare or illness, I have a tendency to stay at home, away from people, until I feel healthier.  By checking my social media sites for news, I feel less isolated and more in tune with the world and people around me.  Participating in social media is a good way to get answers and information to questions about many medical conditions or learn how to participate in special events being sponsored by ALF and other medical support organizations in your community.

All it takes is a little time and a good computer or smart phone connection to stay connected and informed in the medical world around you.  Take advantage of the free wifi offered in many coffee shops and restaurants.  Your local public library offers free wifi, public computers, and technology workshops to teach you how to connect to the Internet.  Not sure where your public library is located?  Check out this nifty Twitter site to help you locate your local public library (@AtYourLibrary).  How cool is that??  Yep, I’m a librarian.

If you are hesitant to share personal medical information in social media, some social media sites like ALF, the American Autoimmune Related Diseases Association (@AARDATweets), Inspire (@teaminspire), Patients Like Me (@patientslikeme) support communities afford patients a chance to remain anonymous while actively participating in many social media communities.  It’s difficult to live with chronic liver disease and other related autoimmune diseases.  Reach out for support and news to feel connected to the world around you.  You might be surprised by the people you meet, waiting to offer medical information and comfort to you during your time of medical crisis.

Thank you ALF, Inspire, Patients Like Me, AARDA, and other medical support organizations who keep us aware of new medical news, research, and support opportunities!  You can follow me for more information about liver diseases, autoimmune diseases, autoimmune hepatitis (AIH) and other medical issues @mags58h on my Twitter account.  For current medical information and timely medical news, finding support is only a mouse click away!

Namaste,

Mags

March is National Autoimmune Diseases Awareness Month

When Spring Stings

March is National Autoimmune Diseases Awareness month. The birds are nest-building in the backyard.  Night sounds have returned to disturb the evening quiet.  Pollen is wreaking havoc with our respiratory system.  Spring heralds with such gorgeous beauty in my neck of the woods.  I would know it was spring without any of the usual sights and sounds.  I can tell the season has changed by noting the changes in my body.  It’s tough to live in the southeast without suffering from sinusitis and cold-related illness.  How do you know if it’s a common cold, sinusitis or a new autoimmune disorder?  Could it be an autoimmune flare?

No matter what our primary autoimmune disorders/diagnosis may be, once diagnosed with an autoimmune disease,  autoimmune patients are susceptible to other types of autoimmune disorders and inflammation.  When you experience some new symptoms and illness, take the time to discuss your new symptoms with your primary care givers to receive the proper treatment.  Looking for some related information on this topic?  Check out these great informational links:

http://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=1&ContentID=985

When the Immune System Chooses the Wrong Target

http://www.sciencedaily.com/releases/2004/03/040324072619.htm

Researchers Show Chronic Sinusitis Is Immune Disorder; Antifungal Medicine Effective Treatment

http://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Vasculitis/

Vasculitis

http://www.unckidneycenter.org/kidneyhealthlibrary/anca.html

ANCA Vasculitis

http://www.swaaa.com/sinusitis/

Caring for Children and Adults with Asthma and Allergies

http://www.niaid.nih.gov/topics/sinusitis/Documents/sinusitis.pdf

Sinusitis-Sinusitis.pdf – National Institute of Allergy and Infectious Diseases (health information)

http://www.cdc.gov/cancer/preventinfections/mold.htm

What People with Weakened Immune Systems Need to Know about Mold

http://www.aarda.org/

March is National Autoimmune Diseases Awareness Month

Keep those tissues handy, practice good germ-killing hygiene, and enjoy your spring fling without the spring sting!

Namaste,

Mags

http://www.rarediseaseday.org/article/get-involved-download-our-communication-materials

February 2014 – Rare Disease Day Awareness

Unless you’ve been diagnosed with a rare disease, you might not associate February with raising awareness for rare diseases.  What could be more appropriate during the month of love than to raise awareness for rare disease patients?  Since my diagnosis with autoimmune hepatitis (AIH) in 2009, I have joined the Rare Disease Day awareness team to advocate for rare disease research, education and support.

I’m kicking off Rare Disease Day 2014 by sharing some of the great ways you can learn about Rare Disease Day events.  Get involved in promoting Rare Disease Day awareness.  Learn more about the different types of rare diseases and the patients learning to live with rare diseases on a national and international level.

Even in the face of adversity, there is peace and beauty.  Looking for a good love story?  During this month, read, watch, and hear some of these personal accounts from rare disease patients learning to live with a rare disease diagnosis.  Rare disease patients live each day, knowing there isn’t a cure for their rare diseases.  See the smiles on their facesNotice the support they receive from family, friends, their personal caregivers, their medical teams, and the kindness of strangers, often members of our wonderful rare disease support associations.

Even in the face of adversity, there is hope.  Interested in raising rare disease awareness?  Searching for a way to participate in this annual rare disease day event?  Check out these terrific rare disease day resources.  Open up your heart and get involved in promoting rare disease day awarenessSpread a little rare disease day love during February and every day by becoming a Rare Disease Day friend.

Namaste,

Mags

Rare Disease Day Awareness resources:

What is Rare Disease Day?  Rare Disease Day.org., http://www.rarediseaseday.org/article/what-is-rare-disease-day

Rare Disease Day USA, http://rarediseaseday.us/about/history/

Global Rare Disease Patient Registry and Data Repository (GRDR) website  http://rarediseases.info.nih.gov/research/pages/43/global-rare-disease-patient-registry-and-data-repository

Rare Disease Day Around the World events: http://www.rarediseaseday.org/

National Institutes of Health (NIH) National Center for Advancing Translational Science, Office of Rare Diseases Research (ORDR), Autoimmune Hepatitis Overview, http://rarediseases.info.nih.gov/gard/5871/autoimmune-hepatitis/resources/1

Chronically Awesome, meets the needs of chronically ill people by providing online support art therapy and creative story telling programs.http://chronicallyawesome.org/

Rare Disease Day.org Awareness Campaign resources, Become a Rare Disease Day advocate via YOUR social media sites, http://www.rarediseaseday.org/article/get-involved-download-our-communication-materials

Rare Disease Day.org on Facebook – press the Like button - https://www.facebook.com/rarediseaseday

Thyroid Awareness Month

January – Thyroid Disease Awareness Month

What better way to celebrate the New Year than having your thyroid checked, right?  It may be something you’ve put off for a while or something you expected to get around to some day.  Mark January on your calendar as thyroid awareness month.  Schedule an appointment with your primary care physician.  Ask your doctor to order those labs that check your thyroid function.  As noted on the AACE website, ask your doctor for a TSH (thyroid-stimulating hormone) test, a simple blood test that measures whether your thyroid gland is functioning normally.  Make sure your thyroid is working at the optimum level, free of disease.

For those of us diagnosed with thyroid disease or thyroid cancer, January is our special month.  We strive to raise awareness about thyroid diseases including autoimmune thyroid diseases like Hashimoto’s thyroiditis and Graves’ disease.  It’s a time for self-reflection and self-examination.  Most women are in the habit of performing a self-examination on their breasts to check for breast lumps.  Get in the habit of performing a self-examination on your neck.  Do you feel any odd lumps, painful nodules, or swollen lymph glands?  Have you been feeling lethargic, fatigued, or sleep-deprived?  These could be symptoms of thyroid disease.  Take the next step and  schedule an appointment with your doctor to have your thyroid checked.

Looking for more information about thyroid disease or thyroid cancer?  Here’s a link to my personal thyroid story, http://www.examiner.com/article/maggie-hoomes-thyroid-journey and you’ll find other links to medical information and support groups for thyroid disease on my previous blog posts.  If you are a thyroid patient, pay it forward and reach out to others needing support or information.  The more we pull together as a team and spread the word about thyroid disease, treatment and research, the closer we are to a cure, more treatment options, and more thyroid research.  Let’s do our part to keep thyroid awareness in the news.

I’m a huge fan of social media.  I write a blog post to raise awareness about autoimmune diseases and thyroid cancer.  I have a Pinterest board for pinning snippets of information about thyroid diseases, diet, and health issues.  I follow several Facebook pages about autoimmune diseases including AIH, Hashimoto’s, and thyroid cancer.  It’s a fun way to raise awareness and connect with others in the same situation.  How do you raise awareness?  I’ve seen some really creative t-shirt designs, bracelets, necklaces, posters, flags, bumper stickers, and even tattoos to raise awareness for thyroid disease and thyroid cancer.

Fundraising is another option for raising awareness about thyroid disease in January.  Check out these great websites to learn how to participate in a fundraiser or to launch a fundraiser in your community.  Whatever flag you wave or soapbox you stand on to raise thyroid disease awareness, do it loudly and proudly, with the rest of us during January, and every month, this year!

American Thyroid Associationhttp://www.thyroid.org/

ThyCa: Thyroid Cancer Survivors’ Association, Inc., Calendar of Events - http://www.thyca.org/support/calendar/

AACE Thyroid Awareness, The American Association of Clinical Endocrinologists – http://www.thyroidawareness.com/

Graves’ Disease and Thyroid Foundation - http://www.gdatf.org/about/about-gdatf/

Namaste,

Mags

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December, My Favorite Month

It’s been a while since I’ve posted any news about AIH, Hashimoto’s Thyroid disease, autoimmune diseases, or shared any health updates.  I’ve been enjoying good health and a new job.  Once life settles back into normal routines, I plan to begin posting, monthly.  It’s more than a New Year’s resolution.  It’s important to me to keep you informed about these health issues and noteworthy news about them.

Let’s work together to keep AIH and other rare diseases, particularly autoimmune, rare diseases in the news.  Let’s resolve to keep raising awareness until more research is conducted and more medical treatments are discovered.  December is my favorite month.  It’s a month filled with hope, love, laughter, and celebrations.  I’m celebrating another birthday, and it’s a milestone for this baby-boomer!  Winter Solstice is my special day.  We celebrate Christmas in my family.  There are other celebrations in other cultures that are wonderful to share.  New Year’s Eve is just around the corner, and I’m always excited to celebrate another new year. 

Leaving you with best holiday wishes for everyone and a Christmas wish for peace on earth…

Namaste,

Mags

Let peace begin with me
Let this be the moment now.
With every step i take
Let this be my solemn vow.
To take each moment
And live each moment
With peace eternally.
Let there be peace on earth,
And let it begin with me.