AIH Resources · The American Liver Foundation · The American Liver Foundation Resources

May – Hepatitis Awareness Month

In case you haven’t heard, May is Hepatitis Awareness Month.  Are you living with hepatitis or worried you might have hepatitis?  Check out the great, free hepatitis resources from the American Liver Foundation.  Follow the American Liver Foundation on Twitter (@liverUSA) to learn 301 important facts about hepatitis for Hepatitis Awareness Month.


It’s important to know the facts and get the latest updates about hepatitis from a reliable source of information.  If you are living with hepatitis or any kind of liver disease, having a support group like the American Liver Foundation (ALF) is a critical part of your wellness plan.

Thinking about participating in a Clinical Trial?  Here’s some information to get you started from the American Liver Foundation:


Are you in need of community education programs about hepatitis and liver disease?  The American Liver Foundation provides great information about finding these valuable programs to help you cope with hepatitis and liver disease.  According to ALF, Community Education Programs are delivered by trained health educators and are intended to provide an overview of specific topics in the area of liver disease and wellness. 

Join us this month and spread the good news!  Many forms of hepatitis are preventable and can be treated if detected early (The American Liver Foundation).  Help is available.  Share the news with someone in need of hepatitis support.  Be #hepaware and learn what can be done to prevent the spread of hepatitis.  Get the facts about hepatitis and share them with your friends, family, and coworkers.  Thank you, American Liver Foundation for your continued support!  

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Autoimmune Diseases

Share Your AIH Story

Throughout September, the American Liver Foundation (ALF) has been focusing on autoimmune liver disease.  October is Liver Cancer Awareness Month.  The American Liver Foundation (ALF) would like to hear from YOU.  Fall is a giving season.  Many of us participate in giving opportunities at work, in our place of worship, our schools, and our community organizations.  There are many ways to give and show your support.  Here’s one way that doesn’t cost you a dime.  Share your AIH story with ALF.

It’s really simple and only takes a few minutes of your time.  Click on this link.  Complete the online form provided by ALF.  It’s your chance to provide an emotional life-line to other AIH patients searching for information, comfort, and hope.  In ALF’s words:

Liver Community Story Submission Form

Storytelling is powerful medicine! Reading a personal experience with liver disease can help provide comfort and inspire others in the liver community on their journeys. 

Need more information?  Check out ALF’s Facebook page and read about other AIH patients, like Sharnell who shared her AIH story.  You might even read my story, soon.  I just completed the ALF online form and pressed the submit button.  Need inspiration?  Check out the ALF Honor Wall.  Your AIH story will appear here.

How about you?  What’s your AIH story?  Pay it forward.  Give a little bit of yourself to help other AIH patients in need.  Follow this link to learn more about ALF’s disease information pages with more information about Autoimmune Hepatitis, Primary Biliary Cholangitis, and Primary Sclerosing Cholangitis.  Thank you, ALF, for your continued support.



AIH Resources

AIHA – Patient Support & Education Weekend

It’s that time of year, again!  Time for the Autoimmune Hepatitis Association (AIHA) Patient Support & Education Weekend.  It’s a good opportunity to immerse yourself in AIH education support services and to join a community that supports AIH patients, caregivers, health care providers, researchers, scientists, and other related members of our AIH support team.

If you are newly diagnosed with AIH and looking to meet others newly diagnosed or living with AIH, this would be an opportunity for you to network with other AIH patients.  What can you expect from the AIHA Patient Support & Education weekend?  Here’s some highlights from AIHA’s agenda:

a 2 day conference, Saturday, 6/10 to Sunday, 6/11, at University Tower, Hine Hall, 875 W North Street, Indianapolis, Indiana

a wide array of patient-centered didactic sessions led by AIH experts

the latest insights into AIH, in a fun, comfortable atmosphere with other individuals with stories to share

There will be interactive learning sessions on a spectrum of AIH specific topics, patient-led question round-tables, personal and focused break-out groups.

 Learning to live with AIH can be a lonely, scary place, at times.  Having a support group can make all the difference in learning to live well with a chronic, rare liver disease.

 You are not alone.  Reach out to AIHA and other support groups sponsored by Patients Like Me and Inspire for help, information, education, and compassion.  Look for links to these support groups on this blog, Facebook, Twitter, Pinterest and other social media sites.  We are always here for you.



Rare Disease Patient Advocacy Day · The National Institutes of Health

AIH Making Headlines in Hepatology Report

Having a rare disease like autoimmune hepatitis (AIH) is trendy during February.  Why?  It’s the annual rare disease awareness campaign promoted by many patient advocate and medical research groups.  This headline caught my attention in my  (@HealioHep) Hepatology Twitter feed, today:  Cirrhosis in  autoimmune hepatitis related to increased risk of HCC.  Click on the link to learn more about this recent medical update for AIH patients with cirrhosis of the liver.  Publication credits go to:  Tansel A, et al. Clin Gastroenterol Hepatol. 2017; doi:10.1016/j.cgh.2017.02.006.

In case you missed it, there was a great Twitter chat going on today with several rare disease organizations sharing patient information links and medical updates about many kinds of rare diseases.  To read this information on Twitter, click on #NIHChat and don’t forget to raise your hand to raise awareness for rare diseases.




AIH Resources

Rare Disease Day – Feb. 28th

Hey, everyone!  It’s that time of year, again.  Time to raise awareness for Rare Disease Day on February 28th.  Living with a rare disease isn’t a cause for celebration.  But, joining in solidarity with others diagnosed with a rare disease is an awesome way to educate yourself and others about rare disease research.  It’s a time to learn about the different types of rare diseases on the Rare Disease Registry.  Most importantly, it’s a time to raise hope and support for finding a cure and better treatment plans for rare diseases.

I received my rare disease diagnosis in 2009 for autoimmune hepatitis, a rare liver disease. Since 2009, I’ve been on a personal quest to learn as much about autoimmune hepatitis (AIH), AIH treatment protocols, AIH research, and learning to live with AIH.  If you are learning to live with a rare disease, you may be aware of Rare Disease Day and the ways you can participate in this international event.  Participating in Rare Disease Day events is a huge balm for your soul, a time to take a breath, reach your hand out to others living with rare diseases and raise some hope for the future.

I don’t know if scientists will ever find a cure for AIH, autoimmune diseases, cancer, or rare diseases in my lifetime.  By participating in Rare Disease Day, I feel more hopeful and less isolated by celebrating rare disease awareness and life with others in the Rare Disease Community.  Here’s how you can participate.  Follow Rare Disease Day on Twitter, Facebook, Pinterest, Instagram, YouTube and other social media sites.  Share your rare disease story.  Create a Pinterest board featuring information about your rare disease.   Add a Rare Disease Day Twibbon on your Twitter profile.  Check the Rare Disease Day list for finding community and international events; free, downloadable Rare Disease Day educational resources; the official Rare Disease Day YouTube Channel and more ways you can participate in Rare Disease Day.  

Often, it’s the smallest actions that create the biggest impact in the world.  Raise your hand in support of Rare Disease Day on February 28th.  You’ll find seven ways to get involved with Rare Disease Day on the Rare Disease Day website.  Find your voice and use your creativity to let the world know YOU support Rare Disease Day and WHY it’s important to YOU.



Rare Disease Day YouTube Channel –

Rare Disease Day US Facebook page –

Rare Disease Day Facebook page –

Rare Disease Day US Twitter page –

Rare Disease Day website –

Rare Disease Day Handprints Across America project –

Rare Disease Day Downloadable Resources –

Seven Ways to Get Involved with Rare Disease Day –

NORD – National Organization for Rare Disorders –

Autoimmune Hepatitis Research Network –

American Academy of Dermatology · MedLinePlus Resources · The Mayo Clinic · ThyCa · Thyroidectomy

World Cancer Day – February 4th

Today is World Cancer Day.  Receiving a cancer diagnosis can be scary.  I’ve had two cancer diagnosis – papillary thyroid cancer and basal cell carcinoma.  After hearing the cancer diagnosis, I turned to the internet, searching for reliable cancer information to guide me in making informed decisions about my cancer treatment.  Fortunately, cancer patients can find excellent educational resources and emotional support from several trusted sources.

Check out the great resources from a few of my favorites.  For information about World Cancer Day, check out the World Cancer Day website and help promote their good news about cancer research on their social media sites.  To learn more about papillary thyroid cancer and to find a thyroid cancer support group, check out ThyCa: Thyroid Cancer Survivor’s Association, Inc.  ThyCa gave me great support before and after my thyroidectomy.  It’s a free, online support group.  You can join and participate, anonymously, or self-identify, whatever you feel comfortable with.

Check out the great educational resources for basal cell carcinoma and other skin cancers on the American Academy of Dermatology website.  MedlinePlus is a wonderful, free resource for medical information about a broad range of topics, including thyroid cancer and autoimmune diseases.  Mayo Clinic’s website is an easy way to find answers for any medical symptoms that you are concerned about.

Remember, you are your best patient advocate.  Take control of your future by being proactive in your medical care.  I suspected I had papillary thyroid cancer and basal cell carcinoma before my physicians confirmed the cancer diagnosis.  By seeking medical treatment, I increased my chances of being cancer-free for the rest of my life.  Spread the good news about World Cancer Day with your friends and family.



AIH Resources · American Heart Association · Multiple Autoimmune Diseases

Heart Disease & Autoimmune Disease

Today, the American Heart Association celebrates National Wear Red Day – Go Red for Women to raise awareness for heart disease.  Having autoimmune diseases like autoimmune hepatitis (AIH) and Hashimoto’s Thyroid Disease means our bodies are genetically wired differently and puts us at risk for other diseases.  It’s not uncommon for autoimmune disease patients to have  high blood pressure and high cholesterol.  Getting your heart checked, regularly, is a great way to be proactive in safeguarding your healthy heart.

I was born with a heart murmur.  I’ve had to deal with bouts of tachycardia, which is a heart rate that exceeds the normal resting rate, for most of my life.  Recently, I finally gave in to my cardiologist’ advice to have a catheter ablation.  Before having the catheter ablation, a common procedure for abnormal heart rhythms, arrhythmias, I found peace of mind by reading the wonderful, free resources and patient education information featured on the American Heart Association website.

If you find yourself in need of the best heart-healthy information and heart surgical procedure guides, check out these heart-warming resources from the American Heart Association.  Join the American Heart Association by wearing red in support of National Wear Red Day.  Thanks for opening your heart to us, American Heart Association!