Hey guys! I'm a 19 year old female, and I was just diagnosed with PCS about a week ago. I'm not finding very much in depth information online or at my library on the condition. Also, I have found no literature on what the differences might be in young people who are diagnosed with the disease. I'm interested in finding as many others close to my age that have PCS to get first hand experiences and so that we can support each other.
Hi, I’m an 18 year old male, and have been diagnosed with PSC about a year and a half ago. What are the symptoms you experience / bother you the most?
Hey Dennis, really great to meet you. All of this started this past summer. I had mono which really sky-rocketed my enzyme levels. At the time I had all the symptoms of liver failure which were really difficult to deal with (I'd say itching and jaundice were the worst). Thankfully now a lot of my symptoms have gone away. However my absolutely fantastic doctor continued tests, and that is how we came to this diagnosis. The only symptoms I really have now are very little appetite and lots of fatigue. I also have a pretty weak immune system, so I've become even more of a "clean freak" because it is so easy for me to get sick. Especially since I started college I feel like everything is dirty. Thankfully they finally let me move off campus! What about you?
Dennis Greenberg said:
Hi, I'm an 18 year old male, and have been diagnosed with PSC about a year and a half ago. What are the symptoms you experience / bother you the most?
Hey, sorry about your diagnosis. I'm not too close to your age but I hope I'm close enough haha! I'm 25 but was diagnosed just 3 weeks before I turned 21.... Happy 21st Birthday to me..... From all of the research that I have done, I realized that PSC is very individualized, especially with symptoms. I've heard of people never having any symptoms to people who are miserable all the time. I personally experience intense pain randomly in the upper right abdomen and when I'm not in pain, 90% of that time I feel some type of discomfort. I found a lot of information on Mayo Clinic's website about this disease, but for me personally, I found a lot more information that relates to me by asking others who have this disease. My advise to you: don't dig too deep and assume that all of the symptoms and end results will happen to you. It is very scary to think about and has taken a toll on me for a while, but I remind myself that this disease is different for everyone and some (if any) symptoms might not apply to you.
Hey Dannie! Good to meet you. 25 is definitely in this age group! I'm already seeing that PSC is different for every person. Thankfully I have an amazing doctor who has more personalized information for me. I had pain in my abdomen this past summer when I first showed symptoms (luckily they're almost all gone away now). I'm sorry that you're still feeling uncomfortable. Over the summer some of the things that I did to help were some simple yoga poses and stretching. How did being in college effect your experiences of PSC? I'm in my first semester now.
In college, I still had that pain off and on. I felt embarrassed because I had other roommates, I lived on campus and I was near screaming in pain when I had attacks. I only get these a few times a year, but it did affect me during college. I tried to fight as much as I could to keep up with going to class and studying, but sometimes it just is too much. General college advise, if you feel like you are falling behind for any reason, talk to your professor. They work with you. Even if you are having issues with the disease, be honest with them. I found that very helpful. Also, get doctor notes if you miss class tests due to going to doctors. I missed a test because I had been in the ER and my teacher asked me to show a note stating I was actually there rather than skipping the test Keep up doing what you think works for you to keep you feeling better. If you have problems, don't do more than you should and exhaust yourself. I kept telling myself that school is not as important as my health.
Lily said:
Hey Dannie! Good to meet you. 25 is definitely in this age group! I'm already seeing that PSC is different for every person. Thankfully I have an amazing doctor who has more personalized information for me. I had pain in my abdomen this past summer when I first showed symptoms (luckily they're almost all gone away now). I'm sorry that you're still feeling uncomfortable. Over the summer some of the things that I did to help were some simple yoga poses and stretching. How did being in college effect your experiences of PSC? I'm in my first semester now.