I want to ask how do you tell people about PSC? In my country people mostly don’t know this rare disease and don’t understand what I’m going through… Just my family…
Hello Evrim! Do not bother you the social part of the case! Do not need to give explanations for your health ... only to people who understand you ...!!!
Hi Costas,
My doctor said “don’t limit your activities your life for this disease”. BUT HOW? I have to go everywhere with my drugs… Itches can come out anytime, anywhere. How can I be social, how can I enjoy life like this?
What country are you from.
Hi Evrim,
I have a short answer I give to people who don't know what PSC is. And hey, it's called an "orphan" disease because it's so rare. I say, PSC is an autoimmune disorder of the bile ducts in my liver. It means that the bile ducts close up and I can't process food or all the other things that pass through my liver. And that's about it. If they want to know more, you can tell them to google PSC. They don't even need to know primary sclerosing cholangitis. That's too long. Frankly, I only tell people who I think really care about ME, not the disease. I am not the PSC. There is still me in here!
To Costas - for some people who have very few symptoms, that's easy for your doctor to say. But the itching, the fatigue, getting sick and hospitalized don't allow for "don't limit your activities." That's just ridiculous. Later on comes the insomnia and ask anyone (with or without PSC) who has insomnia what their life is like. Good grief. I can tell you this, and encourage you, that it's better for you if you do try to be social in small doses and to exercise daily, even if it's just a few minutes of mild exercise at a time. It helps your outlook tremendously to do these two things. Best wishes to you in finding some improvement to your life.
Hi Coatas,
Primary Sclerosing Cholangitis is a rare disorder suspected to be an immunological disorder. It does not seem to occur in third world countries. The word "'primary' indicates that it is not caused by an accident such as a stabbing, and that although one may have the problems connected with the disease it may be slow moving.
In PSC sclerosing means that the cell walls of the bile ducts which extract bile from the liver are deteriorating and that the flow of bile is gradually reduced. Bile is one of the digestive juices we need in the intestines to digest food.
The ensuing reduction of the bile means that one of the several symptoms of PSC causes intestinal discomfort such as irritated bowel disease or ulcerative colitis. These symptoms can be partly controlled with medication and diet.
The bile is still processed in the liver but since the bile ducts do not properly function, some of the bile is sent back form the liver into the bloodstream. This effect shows up in blood tests.
As a result of this some PSC sufferers eventually develop jaundice and itching skin.
The veins that collect the nutrients from our digested food lead back feom out intestines to the liver is are called the portal veins. Here in a healthy liver the digestive juices are recycled and the food sent on to our bodies. IN PSC these veins swell and cause portal vein hypertension, causing liquid from these veins to leak in to the abdominal cavity.
For a while medications to alleviate the portal vein hypertension, the ulcerative colitis and other discomforts caused by PSD can be effectively controlled.
The best source of information ions to be found on the website of the Mayo Clinic. Experience has shown that so-called alternative medicine and advice dispensed by quack doctors does not help PSO patients.
Although search for better medication and possibly a cure is on, The only solution today is a liver transplant for those who are young and strong enough to undergo such an operation, which is not risk free.
I stand corrected if some of the above is incorrect for more and proper info see:
Adrian
I'm from Turkey.
Fish said:
What country are you from.
Hi Danabee,
I'm trying to tell just as you did but they still don't understand. I'm an architect and I have a busy life. It's difficult to tell about this disease to my boss, my superiors.. I have to got hospital regularly, take drugs regularly.. Some of them understand, and some of them don't. My friends can not understand why I can't go everywhere they go or I can't eat everything they eat anymore.. I have to live a healthy life, but even sometimes they offer me alcohol, and I get really mad. They don't know anything about liver and how must I protect it...
danabee said:
Hi Evrim,
I have a short answer I give to people who don't know what PSC is. And hey, it's called an "orphan" disease because it's so rare. I say, PSC is an autoimmune disorder of the bile ducts in my liver. It means that the bile ducts close up and I can't process food or all the other things that pass through my liver. And that's about it. If they want to know more, you can tell them to google PSC. They don't even need to know primary sclerosing cholangitis. That's too long. Frankly, I only tell people who I think really care about ME, not the disease. I am not the PSC. There is still me in here!
To Costas - for some people who have very few symptoms, that's easy for your doctor to say. But the itching, the fatigue, getting sick and hospitalized don't allow for "don't limit your activities." That's just ridiculous. Later on comes the insomnia and ask anyone (with or without PSC) who has insomnia what their life is like. Good grief. I can tell you this, and encourage you, that it's better for you if you do try to be social in small doses and to exercise daily, even if it's just a few minutes of mild exercise at a time. It helps your outlook tremendously to do these two things. Best wishes to you in finding some improvement to your life.
Thanks everybody..
Honestly, Evrim, whenever "liver disease" comes up, the first thing people think of is "alcoholism." I can see it in their eyes. I used to address that with just a simple, and i didn't get this disease from drinking too much. But most never hear that or just can't get beyond their own beliefs. As for getting angry when they offer you alcohol? Save your energy for something better. And no, we can't do what we used to do or what our friends just do without thinking much about it. I have finally accepted it, but not without a long struggle and frustration. I do what I can. And that's all you can do, too.
By the way, has anyone ever told you about Sarna body lotion (no steroids in it!) for the itching? My hepatologist told me and it really works. Unless your itching is very bad. I use the Sarna and then also put Eucerin body lotion on top of it. Muscle cramps? Try Hyland's Leg Cramps. Has a very low dose of quinine and you can take as much as you like. It's homeopathic. And it really works!
Best of luck to you! And hang in there.
evrim said:
Hi Danabee,
I'm trying to tell just as you did but they still don't understand. I'm an architect and I have a busy life. It's difficult to tell about this disease to my boss, my superiors.. I have to got hospital regularly, take drugs regularly.. Some of them understand, and some of them don't. My friends can not understand why I can't go everywhere they go or I can't eat everything they eat anymore.. I have to live a healthy life, but even sometimes they offer me alcohol, and I get really mad. They don't know anything about liver and how must I protect it...
danabee said:Hi Evrim,
I have a short answer I give to people who don't know what PSC is. And hey, it's called an "orphan" disease because it's so rare. I say, PSC is an autoimmune disorder of the bile ducts in my liver. It means that the bile ducts close up and I can't process food or all the other things that pass through my liver. And that's about it. If they want to know more, you can tell them to google PSC. They don't even need to know primary sclerosing cholangitis. That's too long. Frankly, I only tell people who I think really care about ME, not the disease. I am not the PSC. There is still me in here!
To Costas - for some people who have very few symptoms, that's easy for your doctor to say. But the itching, the fatigue, getting sick and hospitalized don't allow for "don't limit your activities." That's just ridiculous. Later on comes the insomnia and ask anyone (with or without PSC) who has insomnia what their life is like. Good grief. I can tell you this, and encourage you, that it's better for you if you do try to be social in small doses and to exercise daily, even if it's just a few minutes of mild exercise at a time. It helps your outlook tremendously to do these two things. Best wishes to you in finding some improvement to your life.
What do you think mate? That people everywhere know the disease?
You yourself didn’t know about it until you were diagnosed with, wrong?
The same is here, mate.
Evrim --
Of course the decision to talk with friends about any disease is personal. With PSC I make my decisions about how to raise the topic based on how well I know them. I have a relatively unique work situation in that I work remotely and I'm pretty free to set my own schedule. That makes it possible for me to simply say "I had a rough night last night" when it's relevant, like I'm not online much during the day. As for friends/acquaintances that I'm not close to, I might say a little more. For example, between the PSC and UC, I have a very restricted diet and when I'm eating with others, I'll just say, "oh, there's very little I can eat, otherwise I get sick". That usually helps them to understand well enough that I need to choose what I eat. With closer friends, I'm more up front about the details.
And one of the things I've had to learn is that they're not really a very good friend if they push me to drink alcohol or eat something once I've told them clearly that it will make me sick.
Best of luck!
Thanks for all your advices and your interest everybody. Take care…
Hi all.
None of us can tell how long we have to live with PSC but Mayo website allows you make a calculation:, It's called:
The Revised Natural History Model for Primary Sclerosing Cholangitis
see:
Adrian
Reveling your PSC status can be very difficult to explain to people because there is so much to explain. PSC is a diease that must be fully explained leaving something out would confuse someone and encourage them to ask many questions that you may be uncomfortable with. I have been living with PSC for 11 years since I was 10 years old. Explaining or telling people has been a rough and long road for me but it’s something I can proudly say that I’ve mastered about 85-90% of the time. Going to party’s having PSC is hard espically when people are drinking aroud you, people get curious why aren’t you drinking with them. Dealing with this early in my life was very hard I typically lied to shield myself from explaining or reveling such a personal piece of information to strangers or people that I didn’t trust with the most important part of my life. Explaining your pain and fatigue and why you don’t drink etc can be very hard Evrim, but I encourage you to break out slowly into explaining your PSC to people.
Hi Adrian,
I made the calculation and the result; 99% survival :) The risk is very low (-0,422...)
Thanks a lot... I feel much better now.
Take care..
adrian said:
Hi all.
None of us can tell how long we have to live with PSC but Mayo website allows you make a calculation:, It's called:
The Revised Natural History Model for Primary Sclerosing Cholangitis
see:
http://www.mayoclinic.org/medical-professionals/model-end-stage-liv...
Adrian
I'll try giving people a sheet about disease. Thank you for your advice..
Big Steel said:
Hello Evrim,
I think all of run across this problem of educating people about our disease. What I do is is give them a sheet I did up that includes a basic definition of the disease and websites that can be checked for further information. This has saved me a lot of frustration. If the same people ask me a second time, I know they didn't do much with the information I gave them and likely are not all that interested.
Frankly it's been my experience that very few people care about the disease, even family. I guess it's human nature. We are preoccupied with our own issues. As long as you have enough people who support you when you feel sick or discouraged, then it doesn't matter about the rest.
Evrim,
I would say, do not feel as if you need to go deep into explaining what it is that YOU are having to go through, however, do share that something is going on and make it easy for other (and yourself) to accept the situation. We hid the condition (We do not say disease - it just seems too dark for us.) originally and only when PSC sent us to the ER we would share the extent of the issue. Now, we participate in charity events for PSC, check in with close relatives after appointments and allow others in to our lives if they chose. We do not give all the details (negative change in blood tests, new symptoms, insomnia) however we do say to those close to us that the condition is still present and we are still working on it. PSC can be scary. Think about the first time you read/heard about PSC. I bet it was pretty heavy. We chose not to put that dark cloud over everyone/anyone we speak to. Rather educating them on fact with a light approach so that they do not worry for us. For strangers/co-workers/acquaintances, quickly, we tell people, that ask, 'It is a rare condition that effects the way the liver/body breaks down materials in the body.' That's it. If someone wants more details, simply say 'it's somewhat confusing, the body reacts to chain effect symptoms as the condition progressives, so it's almost as if the body is a fine vehicle that requires a lot of maintenance" and they will usually drop it. When telling someone you have a "liver disease", like other members wrote, you will see people assume that this is a result of drugs/alcohol. Keep it simple. Accept that something is different but hey, you have a lot of blessings to be thankful for outside of PSC. Try to focus on those rather than the negatives of PSC. Enjoy the day!
Hi Gloria,
I'm an emotional, a sentimental person; I want people to understand me and treat me nice. I don't want to be sorry (and eventually sick) because of their thoughtless behaviours. That's why I'm trying to explain myself and my condition to them. I want them to be nice and kind to me... Especially people I work with. I want them to understand that they shouldn't be hard on me...
Thanks for your kind words and advices. Take care...
Evrim,
Empathy differs from sympathy. Perhaps first focus on the type of attention you would like to receive when addressing PSC with your friends, family and co-workers. Best of luck.