I was curious if anyone had information at all about how likely it is that PSC can be passed down to your children? My girlfriend really wants to have a baby but I’m hesitant because of my condition and I don’t want to bring in a new life with a high chance of having my disease. Any information would be greatly appreciated!
I would doubt it…When I got psc. no one on either side of my family tree recalled any relative having a liver disease.
That being said, it is auto-immune. Both my brother, niece and I have had colitis. Again, no one up our family tree have had colitis.
There are some people that pass PSC to their kids but it is very rare. Nobody in my family has PSC, except for me. There are several relatives with different autoimmune diseases.
There is no other diagnosis of PSC in my family in fact I had never heard of the condition until many months of testing. There had been some bowel conditions that seem to be familiar in my family, whether there is any connection I’m not sure. I do hope and pray that my children don’t inherit this terrible condition. All the best.
PSC prevalence in the general population is something like 1 in 10,000. Per the PSC Partners registry (~1,500 participants), roughly 1 in 100 PSC patients have a parent with PSC and 1 in 33 PSC patients have a parent with IBD.
I would not allow PSC to affect your future plans for a family. Don’t let it control your actions but follow through on your hopes and dreams for the days ahead. If that includes children, by all means don’t let this diagnose stop you from that. As others have stated, there doesn’t seem to be any concrete evidence that it is passed down to offspring. And even so, PSC is not a death sentence. If you end up needing a transplant there must always be hope in your heart that the right donor will be there for you. I know how you feel and wonder about the future, but I can attest that having almost come down to the dust of death with this disease, my transplant gave me new life and I feel better today than I have in many many years. I’m enjoying my grandson today and you can too my friend!
My father had PSC. He passed away October of 2013. I now have it as well. I found out I had it as well just a few days after he passed. I do keep an eye out on my boys. I have both an older sister and younger brother who does not have it. Also my grandfather passed year ago before I was born from liver failure. We don’t know if it was PSC but it is likely that it could have been. I wouldn’t put your life on hold, as we should not fear but have faith.
Researchers have shown that there is a genetic predisposition but an environmental trigger is needed, such as long term use of antibiotics. There are precautions you can take with your child if he/she needs antibiotics such as taking probiotics during the course of antibiotics.
The folks on the thread noted part of what I was going to add to the conversation. My husband has PSC and UC. He has maternal uncle who has liver cancer and another with UC, as well as a maternal cousin with GI issues that are undiagnosed. Needless to say, there is no other cases of PSC in his family. My understanding is that there is in fact some genetic predisposition but the autoimmune disease link can manifest itself differently in each person. Our daughter (my stepdaughter) has had blood work done to see if there were any abnormalities. We had a talk with our transplant team on the subject because I too was very, very concerned with the possibility of bringing someone into the world and burdening them with this condition. They encouraged us to not focus on the slim what-ifs and live life (and actually encouraged us to try for a child). I hope you find what you’re looking for and feel comfortable making the decision that is right for you and your partner. Be well,
There is suppose to be a genetic factor, but I think it‘s quite unlikely your children would get it and that the „what might happen“ should not stop you.
No one in my family has PSC or a autoimmune disease except for me. The only thing my brother has is hay fever.
Guess I got the jackpot. In all honesty my immune system was always a little bit off. I had neurodermatitis as a child. Then was pretty healthy till I was thirty. With 32 I was diagnosed with PVNS and afterwards UC and PSC.
What can I say my totally healthy parents got me. Sorry to tell you, but there is no guarantee for healthy children, no matter how healthy (or unhealthy) you are. However I‘m pretty sure you will love your children more than anything else in the world and you will never regret it, unimportant if they are totally healthy or not. Well if you decide to have any.
Hey it’s been a while but I want to say I appreciate everyone’s comments on this thread. I was mostly looking for numbers or statistics of how likey it would be to pass it to children but it seems pretty unanimous to everyone that it’s slim that it would be passed down which is nice to hear! I’m going to talk with my PCP and specialist just to get info from all sides! To Steffi who recently commented I understand not every child born is a healthy child and everyone has health problems as they age. That wasn’t the point of my post. I wanted to know that if I did have children would they be at a higher risk for my disease. If there was evidence where it would then I would have a conversation with my girlfriend about adoption because I’m not helping bring someone into the world who will more likely than not be dealing with liver disease a majority of their life. I’m pretty relieved that it seems slim that my child would ever even have the disease and I thank everyone for taking the time out of their day to answer this! It means a lot to be able to post questions on here.
No one on either side of my family tree has had any liver trouble. My brother and I both had colitis, an auto-immune disease. Our GI was astounded that we both had it. Now my niece has colitis too.
Auto -immune diseases can be passed down; I had hoped it would have skipped my niece.
My grandfather had it . We found out 6 after I was diagnosed and it seems he had it but is was like sleeping for many years . Eventually he passed away out of cirrhosis 2 year down the line . In my case it seems there was a relation
TNA, welcome back.
Sorry about your grandfather.
I was told that PSC isn’t hereditary by my specialists. My daughter in fact donated her liver to me. That was my biggest fear is that she too would have it but she doesn’t. Go ahead and live your life, don’t let PSC from having children, they are your greatest gift in life.
Take care of yourself.