2017 AIH Paitient Resource

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.



2017 AIH Paitient Resource · 2017 Rare Disease Day · 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.




2015 AIH Resources · 2017 Rare Disease Day

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 – https://www.youtube.com/user/rarediseaseday

Rare Disease Day US Facebook page – https://www.facebook.com/RareDiseaseDay.US/

Rare Disease Day Facebook page – https://www.facebook.com/rarediseaseday/

Rare Disease Day US Twitter page – https://twitter.com/RareDayUS

Rare Disease Day website – http://www.rarediseaseday.org/

Rare Disease Day Handprints Across America project – http://rarediseaseday.us/get-involved/handprints-across-america/

Rare Disease Day Downloadable Resources – http://www.rarediseaseday.org/downloads

Seven Ways to Get Involved with Rare Disease Day – http://www.rarediseaseday.org/article/get-involved

NORD – National Organization for Rare Disorders – https://rarediseases.org/?s=A&post_type=rare-diseases

Autoimmune Hepatitis Research Network – http://medicine.iupui.edu/gast/programs/autoimmune/

2017 AIH Paitient Resource · 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.



2015 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!



2017 AIH Paitient Resource

2017 AIH in the News

Thanks American Liver FoundationHeartland for tweeting about autoimmune hepatitis, today!  If you have been diagnosed with autoimmune hepatitis (AIH), check out the terrific resources on the American Liver Foundation website for more information about AIH.  It’s a great resource for AIH patients, care givers, and physicians.

I was amazed and alarmed to learn how little my physicians knew about AIH when I was first diagnosed.  I created this blog, Ask Me About AIH, to share my resources with others needing this critical medical information.  AIH is listed on the rare disease registry, and researchers are still in the early-learning phase to develop treatment protocols for this rare, autoimmune liver disease.

I found comfort and much-needed assurance by reading the open-access, free medical information about AIH on the American Liver Foundation.  I know you will find comfort, too.  Check out the American Liver Foundation’s great resources.

Gold star for you, ALF, for being an AIH patient advocate!



2016 Autoimmune Thyroid Disease/Cancer Resources

Thyroid Disease in the News

Did you hear the news?  Thyroid Awareness has been voted the 2016 Winner Best Thyroid Disorder Blogs by Healthline.

You can read about it here: http://www.thyroidawareness.com/hashimotos

Take some time to explore the website.  Learn more about current news and information about thyroid disorders and diseases.    With the holiday season approaching, it’s a great time to get a neck check.  Give yourself the gift of health.  Make it your New Year’s resolution for 2017.

Best holiday wishes,