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Awareness Spotlight - PSC (Primary Sclerosing Cholangitis)
Imagine, there you are – enjoying watching your 3-year old daughter thrive in her new preschool. She loves her new friends, is learning great new things from her teachers, and experiencing what it's like to be part of the social world. Life is good.
Before long, you notice small symptoms that eventually lead you down a road you never expected to travel. She endures test after test before being diagnosed with a disease you have never heard of – Primary Sclerosing Cholangitis (PSC). It's rare for anyone, but especially for a small child.
The walls cave in on you.
Everything changes, but you have to go through the challenges with a smile and strength that your child needs from you. All the time wondering what this will bring to your little girl's life. The same little girl with her excitement for life becomes too fatigued to enjoy a play date. She can't understand it, and many times neither do her friends and their families.
Her mother tells us, "The shock of this news terrified us, but we pray and we seek out the best doctors we can. With no cure, it's the only thing we can do. Early on, we discovered PSC Partners Seeking A Cure, an all-volunteer organization committed to finding better treatment, and ultimately, a cure for this disease since a transplant is currently the only answer once the liver has sustained enough damage." She also adds, "Fortunately, our daughter remains free of many of the symptoms, but her future is unknown. We pray medical advances will be made and our little girl will live a happy, healthy life."
The PSC Partners website provides information for patients, caregivers, families, physicians and medical researchers, and is a virtual life raft of support in the face of a devastating diagnosis. The people involved are all extremely dedicated and working hard to make changes for their loved ones and others affected by PSC. "Together in the fight, whatever it takes."
PLEASE take a moment to see what they are about, and see if there is a way for you to help them make progress in their efforts.
http://www.pscpartners.org/
For additional information, please email us at sisters@lula-belle.com.
Spotlight Testimonial
I was compelled to write to you at this very moment because I just went on your site to check out your b-cause bracelets. Sadly, I have multiple causes I could purchase bracelets for to cover the illness that have affected the people in my life... BUT when I saw your "Awareness Spotlight" I was particularly moved. Like your friend's daughter, I too have PSC. It's so rare and, in many ways such a mystery, that I NEVER hear it talked about at all -- so I am sitting here totally moved (my heart is beating hard and there are tears in my eyes even!) just to have read your feature. And despite all my research since my diagnosis I was not aware of the PSC Partners organization you mentioned-- so I want to say a huge THANK YOU for making me aware of it.
from Lula belle customer
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