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THE DUCT
A Monthly Newsletter for the PSC Community
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This is an exciting opportunity for a mission-driven individual to substantially impact the lives of those affected with primary sclerosing cholangitis (PSC) in shaping and implementing the organization's vision while also developing comprehensive strategic plans for PSC Partners' future growth.
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Two Beloved Team Members are Retiring |
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It is with heavy hearts that we announce the retirement of PSC Partners Executive Director Meegan Carey and Information Technology Director Katherine Schultz. They have both been integral to everything we do at PSC Partners, and they will be missed. To reach them, please email contactus@pscpartners.org.
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Together, we are creating a world where a PSC diagnosis comes with a cure! |
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Rare Disease Day, conducted every year by the National Organization for Rare Disorders (NORD), is on the rarest day of the year, Thursday, February 29th. There are many ways you can help increase awareness for rare diseases, including PSC:
- Using your mobile phone, record a brief video letting people know it's Rare Disease Day, and add one thing you want people to know about PSC. Post the video yourself, and/or send it to PSC Partners prior to Rare Disease Day, so we can post it, as well. Send it to ContactUs@PSCPartners.org.
- On Rare Disease Day, put on your stripes and PSC Partners gear, and post a selfie on social media. Create your own message, or use one below:
- Today is Rare Disease Day. Today and every day, I support the 300 million people living with one of 7,000 rare diseases, including one in 10,000 with PSC, a rare liver disease. Get more information about PSC here: PSCPartners.org.
- Today, the rarest day of the year, is Rare Disease Day. Did you know that one in 10 Americans is living with a rare disease? It’s not always obvious to recognize or diagnose a person with a rare disease. As a result, this can cause a delay in care and often negatively impacts a person’s quality of life or life expectancy. Today we recognize everyone in the rare disease community, including one in 10,000 impacted by PSC, a rare liver disease. Get more information about PSC here: PSCPartners.org.
- For all social media posts, tag PSC Partners and NORD, and use #PSCaware, #RareDiseaseDay, and #ShowYourStripes.
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Rejection and PSC Recurrence After Liver Transplant:
A Conversation with Dr. David Goldberg
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In episode 42 of the Living with PSC Podcast, Host Niall McKay talks with Dr. David Goldberg, Transplant Hepatologist and Associate Professor of Medicine in the Division of Digestive Health and Liver Disease at the University of Miami Miller School of Medicine.
The two discuss post-transplant organ rejection and PSC recurrence after a liver transplant, which happens around 30 percent of the time to post-transplant PSC patients.
"The term rejection is problematic, because patients often hear of rejection, and they think the body is rejecting the organ. It's failing. You need a new transplant right away, which is actually not the case," says Dr. Goldberg.
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He explains that hyper-acute rejection, where the body immediately rejects the organ, doesn't often happen anymore with an increase in pretransplant tests to enhance successful organ matching. Additionally, most post-transplant rejection may be treatable, and, overtime and with medication, a patient's body hopefully learns to tolerate the new organ.
"One of the things as it relates to PSC is (that) we know the disease can recur, and, depending on (what) you read and the timeframe you're looking at, (the percentage of recurrence) can be quite high," he says.
Dr. Goldberg explains that this could be due to damage to the bile ducts caused by a post-transplant blockage/narrowing in the hepatic artery which supplies blood to the bile ducts.
Check out the full conversation by clicking the link below.
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Each month, this podcast explores the latest research and knowledge about PSC. From patient stories to the latest research updates from PSC experts to collaborations that are necessary to find better treatments and a cure, this podcast has it all!
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"No one really wants to have PSC, but I, to this day, tell a lot of people that I felt so lucky to have a disease with this dedicated special support group."
-- Recent ZoomRoom Attendee
Register to Join Your Peers for a Virtual Support Group
Whether you've been before, or this will be your first time, we hope you'll join one of these supportive, virtual discussions. It's a great opportunity to speak with others who truly understand while getting the support and connection you need and deserve!
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Adults with PSC &/or Post-Transplant (18+)
Tues., March 12
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Caregivers, Spouses, and Parents
Wed., March 20
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Those Living with Loss
Tues., April 2
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Teens with PSC &/or Post-Transplant
Tues., April 16
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Annual Conference Date and Location Announced Soon |
We know our PSC community wants and needs to know the date and location of the 2024 Annual PSC Partners Conference. Please know that we are working overtime to finalize those details.
We appreciate your patience, and we can't wait to share the plans with you soon for our special 20th anniversary Conference!
In the meantime, review presentations from the 2023 PSC Partners Annual Conference by watching videos on our website and YouTube channel.
Additionally, sign up for a peer-to-peer support ZoomRoom to catch up with friends while meeting some new folks. See links above.
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Check Out This Event for Patients, Caregivers, and Advocacy Groups |
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We've added lots of happenings to our EVENTS page. Click HERE or the button below to check them out. If you have something to add, send it to contactus@PSCPartners.org. We will review all submissions for interest to our PSC community.
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Welcome to Sandi's
Circle
Sandi Pearlman Talks About Embracing Her PSC Self
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The message below is an excerpt from Sandi Pearlman's book Sandi's Journey.
"I'm no longer who I used to be...But I'm a warrior. I'm a fighter and an educator. I'm unafraid to say I have PSC or to take the time to explain to a physician or a bystander what it is. I shout my differences in the name of education and awareness. I teach others not to judge by sight alone. I teach them to listen and help them to find compassion and to want to cure me, to cure those like me. I show those with my disease that they are not alone and that we're in this together."
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Folks who have been in the PSC Partners community remember Sandi Pearlman as a bright, positive light. Her insight, humor, and supportive presence were a real gift to those who knew her. |
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We Care About Our Donors! |
PSC Partners is in the process of finalizing a move to a new donation processing system. While ALL donation information is completely secure, as always, there have been a couple of minor issues with completion of the new donation form. It has only happened in a small number of cases, but, if that happens to you, please know your information is safe, and reach out to us at ContactUs@PSCPartners.org or 303-771-5227. Thanks! |
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Our Mission: PSC Partners Seeking a Cure drives research to identify treatments and a cure for primary sclerosing cholangitis (PSC), while providing education and support for those impacted by this rare disease.
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6900 E. Belleview Ave., Ste 202,
Greenwood Village, CO 80111
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