What I learned from the mothers I have met with PSC is that I have to live my life as it is, not based on the worst case scenario.

Hola. I was diagnosed in October of 2009 with Primary Sclerosing Cholangitis, a year after the onset of the most irrational full body itching. It took a year of doctor’s visits, seeing specialists, tests, procedures, and the addition of Ulcerative Colitis symptoms to figure out what was going on. In November 2014, I found out that I was pregnant with our first child. Risking sounding cliché, this was the most joyous moment of my entire life. After years of building a career, marital shakeup (and healing), and disease management, I had already begun the process of mourning my loss of the possibility of motherhood. It was a helpless and hopeless feeling. I have had a lot of uncertainty in my life, and the desire to be a mom was the only thing I have always been 100% certain of. I thought that PSC had sealed my fate and that our family was destined to be a family of two. A few months before, I had been believing the 10 year mortality statistics found online and making a bucket list. A lot has changed since that low point.

I decided to collect stories through PSC Mami because as I have become more connected to the PSC community, I see that the question of the possibility of motherhood and a safe pregnancy are ones that come up over and over again for women of child-bearing age. There is little information out there. With many women being diagnosed in their 20s, teens and even as children, I feel it is important to have a lived experiences to connect to. In April 2014, attending the PSC Partners Seeking a Cure conference introduced me to a community that understood the uncertainty that this disease brings. I learned that the anxiety about the uncertainty does not need to limit my life pre-emptively. I began to live my life assuming the best case scenario. In February of 2017, I received my life saving liver transplant when my son was 20 months old. Most recently, I was diagnosed with recurrent PSC (rPSC) two years after my transplant.

PSC and UC have redefined my normal multiple times with each progression, stabilization, and even cancer scare that comes along. What I learned from the parents I have met with PSC is that I have to live my life as it is, not based on the worst case scenario. I want to share not only my story but theirs as well, so that our collective experience can create connection for our small community and provide access to information that has been difficult to find. 

The podcast expanded to include the voices of parents of young PSCers and the unique challenges they face. I look forward to more voices joining the conversation.

You can read more about my experience with pregnancy in a blog post I wrote for PSC Partners Seeking a Cure. 

Interviews :
Living with PSC Podcast episode 11
The Sisterhood of Limitless Living Podcast episode 49
Ritual Meals Blog Meet the Mamas profile
Color Podcast with Amber Perez Spotify | Apple Podcasts