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Rare chronic disease awareness

Every week and month, sometimes daily, I read about a rare or chronic disease awareness day (week, or month). As someone who has been diagnosed with such a illness and helps to run a national patient group for those who have this disease, I wonder how we can now stand out in a crowd of a hundred autoimmune diseases and over 7,000 rare diseases according to NORD. Then consider the common diseases that overshadow us.

We all have a central message: "We have ________and need effective treatments and cures." With such a universal endpoint as our goal, how can all of us be heard above the din?

There are broader based groups such as The American Cancer Society, American Lung Association, American Heart Association and many, many more. These groups tend to focus on patient education and advocacy/policy efforts at a national level. And yet the "little guys", often patient founded and volunteer run groups and organizations need to be heard as they are often those "in the trenches", experiencing the daily burden of their disease.

Pediatric diseases and disorders make up about 90% of all rare diseases, without a treatment according to Global Genes) , and too many without any research efforts ongoing at all. This is dismal and doesn't represent our country's health care objectives. The same is true for adults.

While we willingly treat heart disease and its consequences without shaming the patient, liver disease has an enormous stigma about lifestyle choices which can cause liver disease (alcohol abuse, illicit drug use, unsafe sex practices), most of the liver hundred liver diseases known are not caused by lifestyle choices.

According to www.pinmart.com, these are some (edited for space) of the other awareness days in September:

September 21st: World Alzheimer's Day (Purple)
September 29th: World Heart Day
September 5-11: Suicide Prevention Week (Teal-Purple)
Childhood Cancer Awareness Month (Gold)
Gynecologic Cancer Awareness Month (Teal)
Leukemia Awareness Month (Orange)
Lymphoma Awareness Month (Lime Green)
Sickle Cell Awareness Month (Burgundy)
Ovarian Cancer Awareness Month (Teal)
Prostate Cancer Awareness Month (Light Blue)
National Alopecia Awareness Month (Blue)
Thyroid Cancer Awareness Month (Pink-Teal-Purple)

Then there are awareness colors. Our organization has a medium bright green for our Awareness Ribbon but over the years, others have chosen this color as well.

September is PBC Awareness Month. This is the disease awareness effort I most relate to. Thank you to The Mighty for allowing me to add my day to the ever-growing list to be aware of. #Pbc #pbcers



Anyone want to talk? I’ve been living with PBC for almost 5 years. I knew something was wrong before but it wasn’t showing it’s ugly head. Mine is the pain it causes and the constant fatigue and not being able to live the life I had. I morn the old me. I have limitations now and to be honest I push myself, one life to love one life to lead, I try to stay very positive and love to travel. Love my family and my pets, I’m tired of letting this rare disease become me. Had a biopsy earlier this year and stage 2 and start of cirrhosis. Was a big shock and again had my pity party! But it’s changed me, now I’m trying to eat cleaner and stay positive. Have several good PBC friends who are now on the liver transplant list. I pray I won’t ever get to this stage, but we know how fast our lives can change with PBC, stay strong sisters and brothers.

#Pbcaintgoingtoownme #Pbc #Rareautoimmuneliverdisease #Pbcwarrior #Pbcsucks #Pbcstrong #Crueldisease #Pbcsisterhood #Pbcgreenribbon #Pbcliverdisease