Quantcast

Recently diagnosed at 18


#1

Hello,

I’m Brandon and I was diagnosed with PSC a couple months ago at 18. It really doesn’t help a lot with the stresses of transitioning into adulthood and dealing with college. I do, however hope to utilize this website and other support methods to work through it and continue on with my life.

Since I was only recently diagnosed, I don’t know much about my condition. My hepatologist stated I am in the early stages, so hopefully I stay there. But it will take some monitoring to figure out the progression speed of my PSC. My hepatologist is also in a group doing clinical trials for PSC medication, which he offered to me. I have taken his offer and am being vetted for the program. I hope to join the group because I do greatly appreciate the progression of science and human knowledge but also because I hope to help find medication for PSC.

I am really glad to know there are support systems like this website out there and look forward to my time participating here.

Thank you


#2

Brandon,
I want to welcome you to this PSC Community. I’m sorry you are having to deal with this disease as a young man but we want to make your life with PSC as informative as we can. I want to encourage you to continue to go forward with all your plans for college and whatever else the future holds for you. PSC does progress at different rates in each patient. While generally those who are diagnosed at a young age progress relatively slow, there are no guarantees either. Just take one day at a time, educate yourself and your family all about this disease. I encourage you to take a parent or close friend with you to all your medical appointments. This will be even more important as the disease progresses. I also encourage you to sign a “Health-Care Power of Attorney” so that your parents or whomever you hold as close family will be able to act in your behalf if you are unable to. This is a good insurance policy to have in place so that your wishes are always carried out by someone you trust if something happens and you can’t make those decisions.
You are going to have good days and bad days with PSC. I hope you will be symptom free for a very long time. Make sure you are seeing a hepatologist associated with a major hospital that does liver transplants and for now see him at least every 6 months for labs. They will want to do an MRCP annually. There is so much that I could tell you but I’ll leave it with this for now. Be assured that this community will be there for you and do all we can to answer your questions. Please keep in touch and let us know how you are doing. Take care.

Mark
PSC 2011 / Liver Transplant 2015


#3

Brandon,
We hope this website will help you. I am glad you are getting care from a hematologist, as they are liver specialists as opposed to generalists like GI docs.

One of the best things a person can do when diagnosed with a long-term illness is to focus on the long term, and live their life as best as they can. With psc, there is not much that can be done but monitor the disease and treat the symptoms when they arise.

What Mark said about the power of attorney is something that all college students should consider, as they are adults and if hospitalized, the hospital will not want to deal with the parents without something like that due to hippa.

Jeff


#4

Hi Brandon, Try to keep your stress level under control…I realize that is easier said than done sometimes…But I have noticed that stress does seem to bring on my PSC symptoms. Always remember that everything revolves around good health…Dave


#5

Brandon,

I just saw your post, been out of town for the end of summer. I too was diagnosed in my late teens, 35 now.

Please feel free to ask any questions you may have or vent when you need it. Read some of my other replies regarding the philosophy i took as a young man with a disease. I am running out the door from work at the moment but will look some up and send them to you.

This isn’t all bad i promise.

E


#6

hiya brandon
im 17 and recently diagnosed too !
It’s a tough diagnosis but I’ve found that asking loads of questions is the way forward. I’ve become very involved in my treatment and I feel it gives me some control back of my health.
I’ve also had some very positive results from being on urso and my doctor has said it often works well in younger patients.
Good luck with your college work and the trials !
Emily