When Spring Stings

15 Mar March is National Autoimmune Diseases Awareness Month

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!

Blessings,

Mags

February 2014 – Rare Disease Day Awareness

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

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.

Blessings,

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

January – Thyroid Disease Awareness Month

21 Jan Thyroid 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/

Blessings,

Mags

December, My Favorite Month

20 Dec 51st birthday - celebrating the milestones in life

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…

Blessings,

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.

 

Turning Cartwheels – Sharing AIH Research in the News

26 Jul AIH support ribbon, yellow and purple

Yes, this is me turning cartwheels over the good news being reported by the Icahn School of Medicine at Mount Sinai.  It’s not often we get to share good news about autoimmune hepatitis (AIH).  Research dollars are scarce, and it’s good to know that AIH research is being spotlighted in the news, this week.

Here’s the link to the research bulletin with more information:  http://www.infectioncontroltoday.com/news/2013/07/scientists-discover-mechanism-behind-development-of-autoimmune-hepatitis.aspx

Scientists Discover Mechanism Behind Development of Autoimmune Hepatitis

 

(Source:  ICT -  Infection Control Today, retrieved on July 26, 2013, from http://www.infectioncontroltoday.com/news/2013/07/scientists-discover-mechanism-behind-development-of-autoimmune-hepatitis.aspx).

 

This is wonderful news for all of us autoimmune hepatitis (AIH) patients.  As for me, I can’t get this grin off my face considering all the possible, medical outcomes for this amazing AIH research breakthrough.  Thank you, Icahn School of Medicine, for your dedication to furthering AIH research and giving us AIH patients hope for our future.  Whoopee!! Congratulations!! Thank you from all of us autoimmune hepatitis (AIH) patients!!! ♫ ..•* ★¨`*•♫.•´*.¸.•´♥

Blessings,

Mags

Get Inspired

30 Jun http://www.inspire.com/

June has been a busy month for me.  My academic library job search is over!  Whooppeee!   It’s a huge relief for me.  Interviewing and job-searching can be stressful.  Stress can trigger an autoimmune disease flare.  How does a chronically-ill person handle stress and work demands? 

Joining a support group is a good solution for managing stress, work and chronic illness.  Check out the great resources at Inspire.

It’s an easy process to open an Inspire membership account.  It’s free and members can be anonymous.  I follow two of my favorite support groups via Inspire, the American Liver Foundation and ThyCa.  I joined three groups:  American Liver Foundation Support Community, Autoimmune Diseases Support Group, and ThyCa, Thyroid Cancer Survivors’ Association Support Community.  I introduced myself to three discussion groups and began participating in the discussions:  American Liver Foundation Support Community, Autoimmune Diseases Support Group, and ThyCa, Thyroid Cancer Survivors’ Support Community.  I posted in two discussions about Hashimoto’s and Thyroid Cancer and Autoimmune Hepatitis Support Needed.

When you activate your Inspire membership, you can choose your level of participation and anonymity.  If you are feeling overwhelmed by your chronic diseases and you need someone who understands your personal situation, reach out to the Inspire community.  Get Inspired

Blessings,

Mags

Inspire health and wellness support groups

Social Media and Autoimmune Disease Support

30 May AIH support ribbon, yellow and purple

It’s interesting to live in a technology-driven world.  I’m a baby boomer generation member – a child of the 1950s.  It’s remarkable to think about how far technology has advanced since I’ve been earning a paycheck.  I learned to type on a standard typewriter, punching down keys without any rhythm, trying to pass a typing test back in high school.  I rejoiced when the standard typewriters were replaced with the IBM Selectric models that made typing correspondence such a pleasure.  Yes, we’ve come along way, baby!

It’s remarkable the way technology has given us ways to easily connect with each other through social media sites.  When I was first diagnosed with AIH, I began a frantic search for medical information and patient support groups, online.  There weren’t any community groups for patients with my particular autoimmune diseases in my city.  Thankfully, the internet provided medical information and an anonymous, peer/patient support environment to help me through those dark moments of despair when I was first diagnosed. 

I’ve posted most of these links in previous posts, but they are worth repeating and re-posting.  I’m a huge fan of the American Liver Foundation’s (ALF) Facebook page, and I follow their Twitter feed to learn more about liver disease research news, particularly AIH.  I follow the American Autoimmune Related Diseases Association (AARDA) on Facebook and Twitter to learn more about autoimmune disease research, too.  These organizations provide links to free, medical resources to educate patients and the public about liver disease and autoimmune disorders.  They provide online, anonymous patient support groups that let us know that we are not alone during out times of crisis.  Check them out.  Share their information with your friends, family, doctors and coworkers.  You never know who might be in need of reassurance or medical information.

I began writing to help others through that feeling of despair that came with a frightening diagnosis.  It’s such a good feeling to be able to throw a life-line of support to a fellow AIH or Hashimoto’s patient seeking help and medical information.  Pay it forward.

Blessings,

Mags

May 2013 – Another Year of Raising Hepatitis Awareness

29 May American Liver Disease Resources, "I Have Liver Disease."

It’s that time, again.  Time to raise a little hepatitis awareness, particularly autoimmune hepatitis awareness.  Like many patients dealing with chronic illness, I’m hesitant to post about my personal autoimmune hepatitis (AIH) journey.  But, I feel that I’m doing a good public service for others struggling with a new AIH diagnosis or learning to live with AIH.  That’s the reason for keeping my blog in the public blogosphere.  I’ve been job-searching since my December 2012 graduation.  Like others living with chronic illness, I worry if my chances of employment will diminish if I’m linked to AIH, a rare liver disease, and chronic hepatitis.

Hepatitis research and treatment has been making news’ headlines.  Here’s some recent liver news that I found interesting and heart-warming:

New Mechanism for Estrogen Suppression of Liver Lipid Synthesis (retrieved from Science Daily on 5/29/13, http://www.sciencedaily.com/releases/2013/05/130523143729.htm#.UaYDHmCPhzQ and tweeted by the American Liver Foundation on 5/28/13).  “May 23, 2013 — By discovering the new mechanism by which estrogen suppresses lipid synthesis in the liver, UC Irvine endocrinologists have revealed a potential new approach toward treating certain liver diseases.  With this finding, Dr. Ellis Levin and colleagues believe they are changing long-held views in the field. Study results appear in the May 21 issue of the journal Science Signaling.”    As noted in the article, this research is good news for patients living with chronic hepatitis.  “Estrogen plays a role in liver functions, and may be a deterrent to liver cancer, as men get this type of cancer at a rate of four-to-six times more than women and animals models of this cancer show clear suppression by estrogen. The hormone also helps suppress the development of fatty liver, which can lead to liver damage and failure, and inflammatory liver disease that result from chronic hepatitis.”  Thanks, American Liver Foundation for tweeting this good news, this week :).

When I was newly diagnosed with AIH, I asked my GI physician if I would have to stop drinking coffee.  Fortunately for me, I can still enjoy my morning coffee.  Here’s some good news for us coffee-consumers:  Coffee Drinking Tied to Lower Risk for Rare Liver PSC 

This was another great tweet from ALF, this week.  “New research from the US shows that regular consumption of coffee is linked to a reduced risk of a rare autoimmune liver disease called primary sclerosing cholangitis (PSC).  Study investigator Craig Lammert, a gastroenterologist and hepatologist at the Mayo Clinic in Rochester, Minnesota, is presenting the findings at the Digestive Disease Week 2013 conference in Orlando, Florida this week.”  (Retrieved from the Medical News Today website on 5/29/13, http://www.medicalnewstoday.com/articles/260742.php).

Here’s the story that tugged at my heart-strings, this week, courtesy of ALF.  Hang in there, Lindsey!  You have a bunch of new fans to cheer you on and send you good healing karma, prayers and best wishes:

LIVEr Champion: Lindsey Boynton (retrieved from the American Liver Foundation website on 5/29/13, http://www.liverfoundation.org/about/news/479).

Hepatitis 101 – to learn more about hepatitis, download this free pdf from the American Liver Foundation and share it withyour friends, family and coworkers.  (Retrieved from the American Liver Foundation website on 5/29/13, http://www.liverfoundation.org/downloads/alf_download_1055.pdf).

Thank you, American Liver Foundation, for keeping us informed about new developments in the world of AIH, hepatitis and liver research.  Take the time to raise a little hepatitis awareness in your corner of the world.  Check out the great ALF resources and “Spread the word about liver wellness, and pledge to treat your liver well through the month of May and beyond.” (Retrieved from the American Liver Foundation website on 5/29/13, http://www.liverfoundation.org/chapters/ham/).

Blessings,

Mags

National Autoimmune Diseases Awareness Month

20 Mar March is National Autoimmune Diseases Awareness Month.

Kudos to the American Autoimmune Related Diseases Association (AARDA) for launching their wonderful annual, autoimmune diseases awareness campaign!  In case you’ve missed it, March is National Autoimmune Diseases Awareness Month.  Here’s some interesting facts located on the AARDA website:

  • 50 MILLION Americans have an autoimmune disease comprising a major U.S. health crisis.
  • There are 100+ AUTOIMMUNE DISEASES including, autoimmune hepatitis (AIH), Hashimoto’s thyroiditis, Crohn’s disease, celiac disease,
    rheumatoid arthritis (RA), vasculitis, and Addison’s disease.
  • Autoimmune diseases target women 75% more often than men & are one of the TOP 10 KILLERS of women under the age of 65.

To learn more about autoimmune diseases and to learn about ways to get involved with raising autoimmune disease awareness in your community, check out these great AARDA resources, including their March Autoimmune Disease Awareness pdf that you can download, print, and share with family, friends, and coworkers.  This is a great time to take your family medical history inventory to learn more about possible autoimmune diseases in your family.  Your family medical history is valuable, critical information that could save your life and impact your family members in the present and in the future.

American Autoimmune Diseases Association (AARDA) website, https://www.aarda.org/
AARDA, March is National Autoimmune Diseases Awareness Month pdf, retrieved on 3/20/13 from
American Autoimmune Diseases Association (AARDA), patient information, autoimmune hepatitis (AIH), retrieved on 3/20/13 from https://www.aarda.org/patient_information.php
American Autoimmune Diseases Association (AARDA) YouTube Channel, retrieved on 3/20/13 from http://youtu.be/DYbIjFYIohE
American Autoimmune Diseases Association (AARDA) Facebook group page, retrieved on 3/20/13 from

Blessings,

Mags

Reducing Your Salt Intake May Help Your Autoimmune Disease

7 Mar Salt by Salt Shaker   Original Filename: 6507-000073.jpg

It’s been in the news for years.  Too much salt is bad for our health.  Most of us are in the habit of label-reading when we’re shopping for groceries.  We consciously reduce our salt intake when cooking at home.  We use salt substitutes or flavor-enhancers to give our food that zing and zip that once came from a generous sprinkle of salt.

For autoimmune disease patients, reducing our salt intake could make a difference in our autoimmune disease progression, symptoms, flares, and disease management.  Interested in learning more about the impact of salt in our diets?  Check out these resources:

High salt induces pathogenic Th17 cells and exacerbates autoimmune diseases, The Journal of Immunology, 2012, 188, 60.13
Copyright © 2012 by The American Association of Immunologists, Inc., Markus Kleinewietfeld,1,2Arndt Manzel,4Chuan Wu,5Jens Titze,4,6Vijay Kuchroo,5Ralf Linker,4Dominik Muller,3,4 and David Hafler1,2 (Retrieved from http://www.jimmunol.org/cgi/content/short/188/1_MeetingAbstracts/60.13?rss=1)

Autoimmunity:  Rubbing salt in the wound, Nature (2013) doi:10.1038/nature11959. Published online 06 March 201. John J. O’Shea,& Russell G. Jones, Affiliations, Corresponding authors

(Retrieved from http://www.nature.com/nature/journal/vaop/ncurrent/full/nature11959.html)

Blessings,

Mags

 

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