Im 21years old med student and diagnosed with psc and uc ,my parents dont take my disease seriuos and they have no much information about the prognosis of the disease for example about the transplant in the future ,i need your help guys should i inform my parents about this ,because i dont want my mom to take it hard , what do u thing guys any suggestion ?
Yes, you need to tell your parents about this. You are going to need all the support you can get. Take her with you to all your appointments. She needs to understand the seriousness of PSC and that down the road at some point without a transplant you may die. Keep them well informed. When the day comes for transplant you must have a support system in place to qualify. We are here for you. I wish you the very best.
I agree with Mark’s suggestion about taking her with you to your appointments. My wife had somewhat of an understanding of psc, but her going with me to the appointments and talking with the doc, and talking with the doc during my hospitalizations, opened a new reality for her about me and psc.
Don’t sugar coat it. While psc is normally a slowly progressing disease, you, and your parents, need to be ready for any symptom to rear its ugly head at any time.
With UC, I think they will see the effects on you a lot quicker than psc, especially if you are not in remission. That should open their eyes.
Mark and jeff thank u appreciate the support and the sugesstion ,wish that you guys will keep going this way and support psc group , and hope in very short term the world will develop drug that match for treatment of psc as pbc with urso.
Wondered how things were going with your psc and your parents?