PSC Conference (+5 hope) Build your guild and raise your intellect about PSC

I am really excited about this one. It is held in June this year at a hotel that is about 5.5-6.5 hours away from where I currently live. As this is a new diagnosis, I am hungry to learn more about it and to find community. There are online platforms for support, but it isn’t as personal to me as being in person. The conference offers something for those with PSC as well as the friends, family, and loved ones of those with PSC.

This is the link if anyone would like to check it out:

Some topics that I find interested me must are:

  • Preventive Medicine and PSC Michael Roizen, MD, Department of Preventive Medicine and Wellness Institute
    • I  love prevention and wellness. They are my foci as a counselor.
  • The Basics of PSC (The Basics Track) Carlos Romero-Marrero, MD, Department of Gastroenterology and Hepatology, Digestive Disease and Surgery Institute, Cleveland Clinic
    • Learning the basics will be important. I have read a lot, but I’d love to hear what they have to say.
  • Interactive Session: T’ai Chi Chih (Caring for You Track) (offered at the same time as the last one *sad face*)
    • Tai chi is something that I have always wanted to do… well every since I was a teenager watching Jet Lee movies. This is a meditative practice too, so it is up my alley.
  • Issues for Female PSCers in their 20s/30s Moderator: Uma Perni, MD, Department of Obstetrics and Gynecology Panelists: Elaine Bishop, CNM, NP, Fetal Care Coordinator, Natalie Hendrix and Jennifer Sparks, PSC Patients
    • Having children has been a topic of conversation between Birdy and I since before we found out about PSC and Crohn’s. I am concerned about this and would love to see what the doctors in the field are saying about it.
    • The support groups for females 20s-30s is held multiple times. I am really excited about that.
  • Interpreting Your Test Results (The Basics Track) Pierre Gholam, MD, Department of Gastroenterology University Hospitals Health Systems
    • I know a lot about bloodwork, insurance, and the medical field compared to most people I think, but this is all new to me. New test, doctors I didn’t know existed (hepatologists), new types of bloodwork. I am just learning how much I don’t actually know. I think as I age that is the case. “The more you learn, the less you know.”
  • Traditional and Complementary Drug Therapies for PSC and IBD Bo Shen, MD, and Anne Feldman, CNP, Department of Gastroenterology and Hepatology
    • I would LOVE to try something other than “Here is the medicine, take it forever, when you need a transplant let me know and you might get one, then take these meds forever.” It feels a little hopeless.
  • General Session I – Presentation 3 How to Communicate Effectively with your Physician Carol Santalucia, Director of Patient Experience
    • Currently, I feel more talked at by doctors than talked to or conversed with, so this couldn’t hurt. I may not be saying what I need to say in, know what I need to say, or how to say it, etc.
  • General Session II – Presentation 1 Bone Health and Maintaining Fitness Mathilde Pioro, MD, Department of Rheumatologic and Immunologic Disease
    • Fitness is huge in my life
  • General Session II – Presentation 2 Nutrition and PSC Srinivasan Dasarathy, MD
    • I think food is medicine. What do you do when the food might cause the symptoms? But some people think that the right food could reverse the symptoms. I am trying to figure that out and would love to hear what they have to say.
  • General Session III – Presentation 3 Functional Medicine: A Different Perspective for Patients Aunna Herbst, DO, Center for Functional Medicine
    • Functional Medicine doctors are not covered by my insurance, nor did I find some in my area that specialized in what I need. It seemed that the ones that I found did everything. So, while I love the prospective, I am concerned about it being paid for, and being able to meet my needs.
    • That being said. I would love to have a doctor with that outlook about the body.

There are plenty of sessions related to transplants, but that topic scares me as of right now. I am hopeful that the feeling will change over time and I know that I can’t avoid it. One of the first things I should probably begin to do, is find a transplant center. I think I am still in denial that I will need one at all, let alone anytime soon. From what I am learning, that is not the case. It is a very personal disease. It can take years, but it doesn’t always. We will revisit this topic later.




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